Talman, Lena; Gustafsson, Christine; Stier, Jonas; Wilder, Jenny
This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation. A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool. One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented. A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group. Implications for rehabilitation There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities. For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan. The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual's functioning in their environment is not omitted in
Tam, Gee May; Phillips, Katrina J.; Mudford, Oliver C.
We replicated and extended previous research on microswitch facilitated choice making by individuals with profound multiple disabilities. Following an assessment of stimulus preferences, we taught 6 adults with profound multiple disabilities to emit 2 different responses to activate highly preferred stimuli. All participants learnt to activate…
van der Putten, A; Vlaskamp, C; Reynders, K; Nakken, H
Objective: To determine the effect of functional movement activities within the MOVE ( Mobility Opportunities Via Education) curriculum on the independence of children with profound intellectual and multiple disabilities. Subjects: Forty-four children with profound intellectual and multiple
Ten Brug, Annet; Van der Putten, Annette A.J.; Penne, Anneleen; Maes, Bea; Vlaskamp, Carla
Multisensory storytelling (MSST) is a storytelling method developed for people with profound intellectual and multiple disabilities (PIMD). The developers of MSST have established specific guidelines aimed at increasing the listener's attention. Whether, and to what extent, these guidelines indeed
Darling, Joseph A; Circo, Deborah K
This quantitative study assessed whether presentation of preferred items and activities during multiple periods of the day (and over multiple days) increased indices of happiness (over time/sustained) in individuals with PMD. A multiple baseline design across participants was utilized to measure changes in indices of happiness of the participants. Participants were recruited from an adult day activity program specializing in providing assistance to individuals with disabilities. For Mary, baseline indices of happiness were 26.67% of intervals, increasing 6.76% during intervention to 33.43%. For Caleb, baseline indices of happiness were 20.84% of intervals, increasing 6.34% during intervention to 27.18%. For Mark, baseline indices of happiness were 40.00% of intervals, increasing 12.75% during intervention to 52.75%. Overall interobserver agreement was 82.8%, with interobserver agreement observations occurring during 63.04% of the observations. The results of the investigation demonstrated that presenting preferred items and activities increased the indices of happiness compared to baseline rates of indices of happiness. Results may have been more robust if the participants were assessed for overall responsiveness patterns prior to the initiation of measurement of indices of happiness. Copyright © 2015 Elsevier Ltd. All rights reserved.
Neerinckx, Heleen; Maes, Bea
Background: In spite of the profound cognitive and physical problems, people with profound intellectual and multiple disabilities (PIMD) are able to develop joint attention behaviours (JAB) and benefit from positive interactions. Aims: To investigate which context factors influence the JAB of people with PIMD. Method: Based on video recordings of…
Young, Hannah; Hogg, James; Garrard, Brenda
Background: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has…
Kamstra, A.; van der Putten, A. A. J.; Vlaskamp, C.
Background: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. Materials and Methods: Data concerning the…
van den Broek, E.G.C.; Janssen, C.G.C.; van Ramshorst, T.; Deen, L.
Background: The prevalence of visual impairments in people with severe and profound multiple disabilities (SPMD) is the subject of considerable debate and is difficult to assess. Methods: In a typical Dutch care organization, all clients with SPMD (n = 76) participated in the study and specific
van den Bosch, Kirsten A.; Andringa, Tjeerd C.; Baskent, Deniz; Vlaskamp, Carla
Attention to the auditory environment of people with profound intellectual and multiple disabilities (PIMD) is limited, both in research and practice. As there is a dynamic interplay between the quality of the auditory environment and well-being, a study was undertaken to test the validity of the
Penne, A.; ten Brug, A.; Munde, V.; van der Putten, A.; Vlaskamp, C.; Maes, B.
Background Multisensory storytelling (MSST) is an individualised activity for people with profound intellectual and multiple disabilities (PIMD) in which a story is being told with an emphasis on sensory experiences and social interaction. MSST is a promising approach, but needs more empirical
Penne, A.; ten Brug, A.; Munde, V.; van der Putten, A.; Vlaskamp, C.; Maes, B.
Background: Multisensory storytelling (MSST) is an individualised activity for people with profound intellectual and multiple disabilities (PIMD) in which a story is being told with an emphasis on sensory experiences and social interaction. MSST is a promising approach, but needs more empirical research evidence. In general, there is a lack of…
Zijlstra, HP; Vlaskamp, C
Background The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education. Method The medical files, the daily records and daily communication records
Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea
Background Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the
Vlaskamp, Carla; Hiemstra, Saskia J.; Wiersma, Linda A.; Zijlstra, Bonne J. H.
In the Netherlands, the Dutch government instituted policies that enable persons with profound intellectual and multiple disabilities (PIMD) to attend day services. Over the past 15 years, surveys have indicated a progressive increase in the number of hours that such adults spend at day activities centers. However, information about how these…
Hiemstra, S. J.; Vlaskamp, C.; Wiersma, L. A.
Increasing numbers of adults with profound intellectual and multiple disabilities (PIMD) are being offered more--and more frequent--day services at activity centres. Little is known about the way direct support persons (DSP) in activity centres divide their time over the various tasks they have to perform and to what extent they are focused on…
Hostyn, Ine; Maes, Bea
Background: High quality interactions are of crucial importance for quality of life of persons with profound intellectual and multiple disabilities (PIMD). This literature review describes and synthesises studies addressing the interaction between persons with PIMD and their partners. Method: A computerised literature search using defined…
van der Putten, A; Reynders, K; Vlaskamp, C; Nakken, H
Background This study analysed goals formulated in a functionally focused curriculum called Mobility Opportunities Via Education(TM) (MOVE). Method The subjects were 49 children with profound multiple disabilities (PMD) who attended a centre for special education where the MOVE curriculum was
Waninge, A.; Putten, A.A.J. van der; Stewart, R.E.; Steenbergen, B.; Wijck, R. van; Schans, C.P. van der
Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity
Waninge, A.; Putten, A.A. van der; Stewart, R.E.; Steenbergen, B.; Wijck, R. van; Schans, C.P. van der
Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity
Waninge, Aly; van der Putten, Annette A. J.; Stewart, Roy E.; Steenbergen, Bert; van Wijck, Ruud; van der Schans, Cees P.
Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity
Mechling, Linda C.; Bishop, Vanessa A.
This article reports on two studies investigating the use of computer-based stimuli that may then be used to develop activities and programming for students with profound multiple disabilities (PMD). Both studies used an alternating treatments design and systematic assessment strategy to present stimuli sequentially and to measure student…
Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea
Background: Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. Method: Group activities for…
Nijs, Sara; Maes, Bea
Social interactions may positively influence developmental and quality of life outcomes. Research in persons with profound intellectual and multiple disabilities (PIMD) mostly investigated interactions with caregivers. This literature review focuses on peer interactions of persons with PIMD. A computerized literature search of three databases was…
Forster, Sheridan Lee
The quality of life of people with profound intellectual and multiple disabilities (PIMD) is affected by many factors, including health status, involvement in activities, and social networks; but most critical is the quality of interaction experienced by the person on a daily basis. For many people with PIMD, most of whom reside in residential services where they receive 24-hour support, the primary people for interaction are paid disability support workers (DSWs). Quality interaction is ...
Boxall, Kathy; Ralph, Sue
Although there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however,…
van Alphen, Helena; Bossink, Leontien; Schalen, Gertruud Henrike; van der Putten, Annette
Physical activity is beneficial, also for people who are characterized by profound intellectual and severe motor disabilities. However, these people are totally dependent on others to participate in physical activities. To date, promoting physical activity in people with these profound disabilities
Young, Hannah; Hogg, James; Garrard, Brenda
People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has considered how carers conceptualize bereavement in relation to this group. Semi-structured interviews obtained responses from seven carers. Transcripts were examined using interpretative phenomenological analysis. Two superordinate themes emerged: 'difficulty articulating the experience of loss' and 'making sense of bereavement through familiar patterns'. Carers conceptualize bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined. © 2016 John Wiley & Sons Ltd.
Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea
Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. Group activities for children with PIMD initiated by a direct support worker were video-recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded. Limited peer-directed behaviour of the children with PIMD and peer interaction-influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction-influencing behaviours and the behaviour of children with PIMD. Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD. © 2015 John Wiley & Sons Ltd.
Roemer, Miriam; Verheul, Ellen; Velthausz, Frank
To support people with profound intellectual and multiple disabilities (PIMD), it is essential to understand how they experience their environment. Insight into perception behaviour may provide an entry point for improved understanding. A random sample of a 30-min video registration of five participants with PIMD was used to code behaviours per second based on an ethogram containing 157 different perception behaviours in nine categories. Eighty-nine different perception behaviours were observed, of which movements with eyes, head and arms were most common. The senses used most were seeing, hearing and touching. Finally, the function of five perception patterns was established in relation to their function:awareness, focusing attention and tension regulation. Close observation using an observation ethogram provides insight into how people with PIMD perceive their environment. © 2017 John Wiley & Sons Ltd.
Roche, Laura; Sigafoos, Jeff; Lancioni, Giulio E; O'Reilly, Mark F; Green, Vanessa A
We reviewed 18 studies reporting on the use of microswitch technology to enable self-determined responding in children with profound and multiple disabilities. Identified studies that met pre-determined inclusion criteria were summarized in terms of (a) participants, (b) experimental design, (c) microswitches and procedures used, and (d) main results. The 18 studies formed three groups based on whether the microswitch technology was primarily intended to enable the child to (a) access preferred stimuli (7 studies), (b) choose between stimuli (6 studies), or (c) recruit attention/initiate social interaction (5 studies). The results of these studies were consistently positive and support the use of microswitch technology in educational programs for children with profound and multiple disabilities as a means to impact their environment and interact with others. Implications for delivery of augmentative and alternative communication intervention to children with profound and multiple disabilities are discussed.
Jansen, S L G; van der Putten, A A J; Vlaskamp, C
The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of 'family-centred care'. To what extent family-centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non-parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Parents rated situations related to 'Respectful and Supportive Care' and 'Enabling and Partnership' with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for 'Providing Specific Information about the Child'. Parents of children in the '6-12 years' age group gave significantly higher scores on this scale than did parents of children in the '≥17 years' age group (U = 288, r = -0.34). This study shows that parents with children with PIMD find family-centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important. © 2012 Blackwell Publishing Ltd.
Poppes, P; van der Putten, A J J; Post, W J; Vlaskamp, C
Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD. To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour. The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour. These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour. © 2016 MENCAP and International Association of the Scientific Study of
Jansen, S. L. G.; van der Putten, A. A. J.; Vlaskamp, C.
Background The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of family-centred care'. To what extent family-centred principles are also applied to the support of persons with profound
Munde, V; Vlaskamp, C
When providing activities to individuals with profound intellectual and multiple disabilities (PIMD), direct support persons (DSPs) often face questions that are, among other things, related to the alertness of the person with PIMD. While previous studies have revealed that stimulation might have a greater impact on levels of alertness than the internal conditions of the individual, they have also emphasized the importance of interaction in order to influence the level of alertness. Because the initiation of this interaction has been described as one of its core components, the present study has focused on the relationship between the stimuli presented, the initiation of the activity (by the person with PIMD or the DSP), and the level of alertness of the person with PIMD. Videotapes of the one-to-one interactions of 24 individuals with PIMD and their DSPs in multisensory environments have been scored using the Alertness Observation List. In a sequential analysis, the percentages of stimuli presented were related to the percentages of initiation. Furthermore, two other analyses focused on the relationship between the level of alertness and the preceding and subsequent percentages of initiation respectively. The results show that high percentages of the activities are initiated by the DSPs. In addition, activities that were initiated by the individual with PIMD were preceded and followed by higher percentages of alert behaviour than those initiated by the DSP. Outcomes differed for the different types of stimuli. These results have striking implications for the lives of individuals with PIMD. It is quite possible that DSPs often act too quickly, whereas they would be better off waiting for a reaction on the part of their client. In general, DSPs need to find a balance between being passive themselves and promoting in the individual with PIMD a state of being as active and alert as possible. © 2014 MENCAP and International Association of the Scientific Study of
Vlaskamp, Carla; Nakken, Han
For several reasons, people with profound and multiple disabilities may be offered a variety of therapeutic interventions. Thus far, researchers have shown a limited interest in providing an empirical base for these interventions. Research is needed on the theoretical rationale (if any), the
Wessels, Marleen D.; Bossink, Leontien W.M.; van der Putten, Annette A.J.
One of the benefits of physical activity in people with profound intellectual and multiple disabilities (PIMD) is an increase in alertness. This study investigated the effect of a power-assisted exercise intervention on alertness and the relationship of this effect to the level of additional motor
Lancioni, G.E.; Bellini, D.; Oliva, D.; Singh, N.N.; O'Reilly, M.F.; Sigafoos, J.; Lang, R.B.; Didden, H.C.M.
A camera-based microswitch technology was recently used to successfully monitor small eyelid and mouth responses of two adults with profound multiple disabilities (Lancioni et al., Res Dev Disab 31:1509-1514, 2010a). This technology, in contrast with the traditional optic microswitches used for
van der Heide, D. C.; van der Putten, A. A. J.; van den Berg, P. B.; Taxis, K.; Vlaskamp, C.
Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed.
Lancioni, Giulio E.; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff
These two studies assessed camera-based microswitch technology for eyelid and mouth responses of two persons with profound multiple disabilities and minimal motor behavior. This technology, in contrast with the traditional optic microswitches used for those responses, did not require support frames on the participants' face but only small color…
Simmons, Ben; Watson, Debbie
Children with profound and multiple learning disabilities (PMLD) are said to experience severe congenital impairments to consciousness and cognition stemming from neurological damage. Such children are understood as operating at the pre-verbal stages of development, and research in the field typically draws conceptual resources from psychology to…
Fonteine, H.; Zijlstra, H. P.; Vlaskamp, C.
Background: Because of the complexity of the problems that affect children with profound intellectual and multiple disabilities (PIMD), communication between parents and teachers at special educational centres is indispensable. Logs are widely used in the Netherlands although only little is known
Bindels-de Heus, Karen G. C. B.; van Staa, AnneLoes; van Vliet, Ingeborg; Ewals, Frans V. P. M.; Hilberink, Sander R.
Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16--26 years) completed a web-based questionnaire. Twenty-two percent of…
Lancioni, Giulio E.; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N.; O'Reilly, Mark F.; Lang, Russell; Didden, Robert
A camera-based microswitch technology was recently used to successfully monitor small eyelid and mouth responses of two adults with profound multiple disabilities (Lancioni et al., Res Dev Disab 31:1509-1514, 2010a). This technology, in contrast with the traditional optic microswitches used for those responses, did not require support frames on…
Bobzien, Jonna L.
The field of special education has begun to concentrate its efforts on developing objectives and procedural strategies that promote a positive quality of life for students with profound multiple disabilities, while determining which educational strategies are the most appropriate. A multi-element design was used to compare the effects of two…
Petry, K; Maes, B; Vlaskamp, C
Background This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with
Kamstra, Aafke; van der Putten, Annette A. J.; Vlaskamp, Carla
Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of…
de Boer, Anke A.; Munde, Vera S.
Despite the growing introduction of inclusive education, children with profound intellectual and multiple disabilities (PIMD) are barely included. Because an underlying factor here may be the attitudes of those directly involved, the present study focuses on the attitude of parents and relating variables concerning experience with individuals with…
Axelsson, Anna Karin
Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…
Munde, Vera; Vlaskamp, Carla; Vos, Pieter; Maes, Bea; Ruijssenaars, Wied
Although observation largely takes into account the needs and abilities of individuals with profound intellectual and multiple disabilities, several difficulties are related to this assessment method as well. Our aim in this study was to investigate what possibilities the use of physiological measurements make available to validate alertness…
Kamstra, A.; van der Putten, A. A. J.; Post, W. J.; Vlaskamp, C.
Background: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. Materials and Methods: Regression analysis for 200 people with PIMD was used to analyse how age,…
van der Heide, D. C.; van der Putten, A. A. J.; van den Berg, P. B.; Taxis, K.; Vlaskamp, C.
Background: Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed. Method: Persons with PIMD with an…
Poppes, P.; van der Putten, A.A.J.; ten Brug, A.; Vlaskamp, C.
A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give
Forster, S; Iacono, T
The interactions experienced by adults with profound intellectual and multiple disabilities (PIMD) with their disability support workers (DSWs) may have a large impact on life quality. However, defining good-quality interaction has presented challenges for this group. It has been suggested that in typically developing infant-mother dyads, the presence of affect attunement may be an indicator of quality. Affect attunement refers to the recasting of one person's affect by another with emphasis. The presence and nature of affect attunement in interactions between 21 pairs of adults with PIMD and their DSWs were explored in this study. Natural interactions were videorecorded for 21 pairs of adults with PIMD and their DSWs. The recordings were analysed for the presence and nature of affect attunement incidents, and analysed using descriptive statistics. Affect attunement incidents were observed in 16 of the pairs. The DSW's attunement behaviour was in response to subtle, short duration behaviours of participants with PIMD. These brief moments of connection may be a basis of good-quality interaction. © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Luijkx, J; van der Putten, A A J; Vlaskamp, C
Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children. Twenty-seven fathers and 30 mothers raising children with PIMD completed a time use diary on a mobile phone or tablet app, as did 66 fathers and 109 mothers of typically developing children. Independent t-tests and Mann-Whitney tests were performed to compare mean time use. There are no differences in the time use of parents of children with PIMD on contracted time (paid work and educational activities) and necessary time (personal care, eating and drinking and sleeping) when compared with parents of typically developing children. There are significant differences between the parents of children with PIMD and the parents of typically developing children in terms of committed time (time for domestic work and the care and supervision of their children) and free time. The mothers of children with PIMD spend significantly less time on domestic work and more time on care and supervision than mothers of typically developing children. This study shows that the parents of children with PIMD have to spend a significant amount of time on care tasks and have on average 1.5 h less free time per day than parents of typically developing children. This is a striking difference, because leisure time can substantially contribute to well-being. Therefore, it is important not only to consider a child with PIMD's support needs but also to identify what parents need to continue their children's daily care and supervision. © 2017 John Wiley & Sons Ltd.
Chou, Yueh-Ching; Chiao, Chi; Fu, Li-Yeh
Background: Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands. Method: A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with intellectual disability and/or with multiple disabilities living with the family…
Holenweg-Gross, C; Newman, C J; Faouzi, M; Poirot-Hodgkinson, I; Bérard, C; Roulet-Perez, E
To estimate the prevalence of undernutrition among children with profound intellectual and multiple disabilities (PIMD) and to explore its influence on quality of life. Seventy-two children with PIMD (47 male; 25 female; age range 2 to 15 years 4 months; mean age 8.6, SD 3.6) underwent an anthropometric assessment, including body weight, triceps skinfold thickness, segmental measures and recumbent length. Undernutrition was determined using tricipital skinfold percentile and z-scores of weight-for-height and height-for-age. The quality of life of each child was evaluated using the QUALIN questionnaire adapted for profoundly disabled children. Twenty-five children (34.7%) were undernourished and seven (9.7%) were obese. Among undernourished children only eight (32 %) were receiving food supplements and two (8%) had a gastrostomy, of which one was still on a refeeding programme. On multivariate analysis, undernutrition was one of the independent predictors of lower quality of life. Undernutrition remains a matter of concern in children with PIMD. There is a need to better train professionals in systematically assessing the nutritional status of profoundly disabled children in order to start nutritional management when necessary. © 2013 John Wiley & Sons Ltd.
Jansen, Suzanne L. G.; van der Putten, Annette A. J.; Vlaskamp, Carla
Background: There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. Method: A…
Atkin, Keith; Lorch, Marjorie Perlman
Profound and multiple learning disabilities (PMLD) are a complex range of disabilities that affect the general health and well-being of the individual and their capacity to interact and learn. We developed a new methodology to capture the non-symbolic signalling behaviours of children with PMLD within the context of a face-to-face interaction with a caregiver to provide analysis at a micro-level of descriptive detail incorporating the use of the ELAN digital video software. The signalling behaviours of participants in a natural, everyday interaction can be better understood with the use of this innovation in methodology, which is predicated on the ecology of communication. Recognition of the developmental ability of the participants is an integral factor within that ecology. The method presented establishes an advanced account of the modalities through which a child affected by PMLD is able to communicate.
Background: It is now expected that projects addressing the lives of people with learning disabilities include people with learning disabilities in the research process. In the past, such research often excluded people with learning disabilities, favouring the opinions of family members, carers and professionals. The inclusion of the voices of…
Jansen, Suzanne Lg; van der Putten, Annette Aj; Vlaskamp, Carla
There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. A multiple case study ( n = 4) was conducted. Observations were logged for every contact between professionals and parents during 12 months. The mean number of contacts a month ranged from 1.9 to 16.7 across the cases. Most of the contacts were with the child's direct support persons (85.2%) and exchanging information (35.5%) was the most common function. Issues concerning health (28.4%) were the most common subjects discussed. The majority of the mothers' experiences were positive. Direct support persons play a crucial role; they need to be aware of this role and to be trained to fulfill their role to acknowledge parents as partners.
de Geeter, K.I.; Poppes, P.; Vlaskamp, C.
Background Parents of children with disabilities are increasingly considered as experts in the field of care. Their expertise can deliver an important contribution towards planning their child's care and education. The law is increasingly taking this factor into consideration. On the one hand,
Blain-Moraes, Stefanie; Chau, Tom
Background: Physiological responses have been used in individuals with acquired disability to enable communicative interaction without motor movement. This study explored four autonomic nervous system (ANS) signals--electrodermal activity, skin temperature, cardiac patterns and respiratory patterns--to enable interaction with individuals born with…
Ten Brug, A; Van der Putten, A A J; Penne, A; Maes, B; Vlaskamp, C
Multi-sensory storytelling (MSST) was developed to include persons with profound intellectual and multiple disabilities in storytelling culture. In order to increase the listeners' attention, MSST stories are individualised and use multiple sensory stimuli to support the verbal text. In order to determine the value of MSST, this study compared listeners' attention under two conditions: (1) being read MSST books and (2) being read regular stories. A non-randomised control study was executed in which the intervention group read MSST books (n = 45) and a comparison group (n = 31) read regular books. Books were read 10 times during a 5-week period. The 1st, 5th and 10th storytelling sessions were recorded on video in both groups, and the percentage of attention directed to the book and/or stimuli and to the storyteller was scored by a trained and independent rater. Two repeated measure analyses (with the storytelling condition as a between-subject factor and the three measurements as factor) were performed to determine the difference between the groups in terms of attention directed to the book/stimuli (first analysis) and storyteller (second analysis). A further analysis established whether the level of attention changed between the reading sessions and whether there was an interaction effect between the repetition of the book and the storytelling condition. The attention directed to the book and/or the stimuli was significantly higher in the MSST group than in the comparison group. No significant difference between the two groups was found in the attention directed to the storyteller. For MSST stories, most attention was observed during the fifth reading session, while for regular stories, the fifth session gained least attentiveness from the listener. The persons with profound intellectual and multiple disabilities paid more attention to the book and/or stimuli in the MSST condition compared with the regular story telling group. Being more attentive towards
Davis, Kathy; Carter, Simone; Myers, Elizabeth; Rocca, Nicola
Research confirms that children and young people with severe learning disabilities do not have the same level of access to high-quality care, health education and health promotion activities as children and young people without disabilities. This article discusses a quality improvement, action research project to investigate alternative approaches to health promotion that enhance the health and well-being of children and young people with complex neurodisabilities. The project involved assessment of school records and completion by staff of an eight-question survey. It found that the proactive approach of school nurses in raising awareness and understanding through questioning was positively received, and reinforced how meaningful and relevant information could be delivered to these young people. The project also had unexpected benefits, including more integrated team working, increased knowledge, greater awareness and understanding of the importance of health promotion participation, and student satisfaction. ©2018 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.
Lancioni, G E; Singh, N N; O'Reilly, M F; Oliva, D; Basili, G
This paper was to provide an overview of research studies aimed at increasing indices of happiness of persons with severe/profound intellectual and multiple disabilities. Computerized and manual searches were carried out to identify the studies published from 1990 to 2004 (i.e., the period during which the issues of quality fo life and happiness in people with disabilities have become more prominent). Twenty-four research studies were identified. They involved the use of six different procedures, that is, structured stimulation sessions, microswitch-based simulation sessions, leisure activities and favourite work tasks or conditions, positive environment or positive behaviour support programmes and mindful caregiving, favourite stimulation automatically delivered on exercise engagement, and snoezelen. Data tended to be positive with increases in the participants' indices of happiness, but some failures also occurred. The outcomes were discussed in relation to (a) methodological issues, such as designs of the studies, length of the intervention, and number of participants, and (b) personal and practical implications of the procedures. Some suggestions for future research (particularly focused on extending evidence and overcoming present methodological weakness) were also examined.
Zaal-Schuller, I H; Willems, D L; Ewals, F V P M; van Goudoever, J B; de Vos, M A
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD. In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years. A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept. The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD. Copyright © 2016 Elsevier Ltd. All rights reserved.
Munde, V S; Vlaskamp, C; Maes, B; Ruijssenaars, A J J M
While optimally activities are provided at those moments when the individual with profound intellectual and multiple disabilities (PIMD) is 'focused on the environment' or 'alert', detailed information about the impact that the design and timing of the activity has on alertness is lacking. Therefore, the aim of the present study is to shed light on the sequential relationship between different stimuli and alertness levels in individuals with PIMD. Video observations were conducted for 24 participants during one-on-one interactions with a direct support person in multisensory environments. Time-window sequential analyses were conducted for the 120 s following four different stimuli. For the different stimuli, different patterns in terms of alertness became apparent. Following visual stimuli, the alertness levels of the individuals with PIMD changed in waves of about 20 s from 'active alert' to 'passive alert'. While auditory and tactile stimuli led to 'alert' reactions shortly after the stimulation, alertness levels decreased between seconds 20 and 120. Reactions to vestibular stimuli were only visible after 60 s; these were 'active alert' or 'withdrawn'. The results of the present study show that individuals with PIMD show their reactions to stimuli only slightly, so that 'waves' might reflect the optimal alertness pattern for learning and development. Consequently, it is especially important that direct support persons follow and stimulate these individual 'waves' in the activities they provide to their clients. © 2012 John Wiley & Sons Ltd.
Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A. J.; Vlaskamp, Carla
Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the
ten Brug, Annet
In order to include persons with profound intellectual and multiple disabilities (PIMD) into our storytelling culture, multi-sensory storytelling (MSST) has been developed. In a multi-sensory book, verbal text is supported by sensory stimuli, the form and content of the book are adjusted to the
Bossink, Leontien W.M.; van der Putten, Annette A.J.; Waninge, Aly; Vlaskamp, Carla
Objective: To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention.
van der Putten, Annette; Vlaskamp, Carla; Schuivens, Evelyne
Background To offer appropriate activities within the curriculum for children with profound intellectual and multiple disabilities (PIMD) is a challenge. An important determinant of the adequacy of an activity is whether teachers have detailed and specific knowledge about the sensory abilities and
Waninge, A.; Rook, R. A.; Dijkhuizen, A.; Gielen, E.; van der Schans, C. P.
Caregivers of persons with profound intellectual and multiple disabilities (PIMD) often describe the quality of the daily movements of these persons in terms of flexibility or stiffness. Objective outcome measures for flexibility and stiffness are muscle tone or level of spasticity. Two instruments used to grade muscle tone and spasticity are the…
Vlaskamp, C.; Hiemstra, S. J.; Wiersma, L. A.
Persons with profound and multiple disabilities (PIMD) are dependent on staff to be sufficiently knowledgeable as to provide them with appropriate day services. One important determinant of the appropriateness and adequacy of a day support program is the level to which staff have detailed and specific knowledge about the functional abilities and…
Poppes, P.; van der Putten, A.; Post, W.; Frans, N.; ten Brug, A.; van Es, A.; Vlaskamp, C.
Background: Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging…
Wilder, Jenny; Granlund, Mats
Background: Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD. Materials…
Horrocks, Erin L.; Morgan, Robert L.
A multicomponent training package (live training, video modeling, role playing, and feedback) was used to train teachers to conduct assessment and to instruct students with profound multiple disabilities. Phase 1 of the study involved training seven teachers to conduct assessment in three areas: (a) preference assessment (i.e., identification of…
Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A.J.; Vlaskamp, Carla
Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the presentation of stimuli are likely to affect the…
Ten Brug, Annet; Van der Putten, Annette A. J.; Vlaskamp, Carla
Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead…
van der Putten, A; Vlaskamp, C; Reynders, K; Nakken, H
Objective: To analyse the psychometric properties of the Top Down Motor Milestone Test (TDMMT), an internationally used instrument in the planning and evaluation of movement-oriented interventions. Setting: Centres for special education in the Netherlands. Subjects: Children with profound multiple
Poppes, P; van der Putten, A A J; ten Brug, A; Vlaskamp, C
A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give for challenging behaviour in this group. The purpose of this study was twofold: (1) to determine the way staff attribute challenging behaviour in children and adults with PIMD; and (2) to analyse whether more experienced staff attribute challenging behaviour in children and adults with PIMD differently than less experienced staff. In total, 195 direct support staff and an equal number of children and adults with PIMD participated in the study. Direct support staff filled out the Challenging behaviour Attribution Scale (five causal explanatory models of challenging behaviour) to explain challenging behaviour in one individual that they supported. The results show that direct support staff as a whole report the biomedical model as the most plausible explanation for challenging behaviour in children and adults with PIMD. However, in the present study the mean scores on all models are low. This might indicate that a large number of staff found none of the models particularly useful as possible explanations of challenging behaviour in people with PIMD. This could mean that staff have difficulties stating the cause of challenging behaviour in this group. Another possible explanation could be that there is little scientific knowledge about causing and maintaining factors of challenging behaviour in people with PIMD. It could also mean that staff have additional explanations for challenging behaviour in this target group that are not mentioned in the instrument used. Future research should address these issues. No differences were found between more experienced and less experienced direct support staff. Copyright © 2015 Elsevier Ltd. All rights reserved.
Lancioni, Giulio E; Singh, Nirbhay N; O'reilly, Mark F; Sigafoos, Jeff; De Pace, Claudia; Chiapparino, Claudia; Ricci, Irene; Navarro, Jorge; Addante, Luigi M; Spica, Antonella
OBJECTIVE. To evaluate technology-assisted programmes for enabling a woman and a man with brain injury and profound multiple disabilities to acquire leisure engagement. METHOD. The technology for the woman (Study I) involved a portable computer with mouse, a Clicker 4 software package, a touch/pressure microswitch, and an interface to connect the Clicker with the microswitch. This technology allowed the woman to choose with a simple hand response among four stimulus categories (e.g., watching a film and interacting with others), each of which included several alternatives. The technology for the man (Study II) involved a computer-based choice system that allowed him to select preferred songs through a microswitch-aided finger-movement response. RESULTS. Data showed that the two participants learned to use the technology available and selected among the stimulus events thus reaching positive leisure engagement. CONCLUSION. Technology-assisted programmes may provide persons with acquired brain injury and multiple disabilities leisure engagement opportunities.
Bossink, Leontien Wm; van der Putten, Annette Aj; Waninge, Aly; Vlaskamp, Carla
To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention. Pilot randomised controlled trial. A large-scale twenty-four-hour residential facility in the Netherlands. Thirty-seven persons with profound intellectual and multiple disabilities. Participants in the intervention group received a power-assisted exercise intervention three times a week for thirty minutes over a twenty-week period. Participants in the control group received care as usual. Trial feasibility by recruitment process and outcomes completion rates; intervention feasibility by programme compliance rates; potential outcomes by functional abilities, alertness, body composition, muscle tone, oxygen saturation, cardiovascular fitness and quality of life. Thirty-seven participants were recruited ( M age = 32.1, SD = 14.6) and were randomly allocated to intervention ( n = 19) and control ( n = 18) groups. Programme compliance rates ranged from 54.2% to 97.7% with a mean (SD) of 81.5% (13.4). Oxygen saturation significantly increased in the intervention group. Standardised effect sizes on the difference between groups in outcome varied between 0.02 and 0.62. The power-assisted exercise intervention and the trial design were feasible and acceptable to people with profound intellectual and multiple disabilities living in a residential facility. This pilot study suggests that the intervention improves oxygen saturation, but further implementation with the aim of improving other outcomes should be considered with caution.
Brug, Annet Ten; Van der Putten, Annette A J; Vlaskamp, Carla
Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead to changes in teachers' knowledge about preferences and abilities and whether this knowledge was then applied in practice. Three dyads of children with PIMDs and their teachers read an MSST book 20 times during a 10-week period. A questionnaire designed to identify the teachers' current knowledge was filled in before the 1st and again after the 10th and 20th reading sessions. Also, the teachers were asked for their opinion about their newly gathered knowledge. In all three cases, changes in the teachers' knowledge were observed. However, teachers are insufficiently aware of their new knowledge and do not apply it in practice.
Axelsson, Anna Karin; Imms, Christine; Wilder, Jenny
Participation throughout one's life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD). The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD. The interviews revealed participation-facilitating strategies relating to the children's/adolescent's proximal environment, such as "Availability and acceptability of the activity", "Good knowledge about the child" and a "A positive attitude of people close to the child", as well as strategies related to the children/adolescents themselves: "Sense of belonging", "Possible for the child/adolescent to understand", "Opportunities to influence" and "Feeling of being needed". Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD. Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD). Examples of strategies for the child's/adolescents' proximal environment include "good knowledge about the child/adolescent", and, for the child/adolescent, include creating "sense of belonging" and "opportunities to influence". Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities. People in the child's/adolescent's proximal environment need to set
Nijs, S; Vlaskamp, C; Maes, B
The multiple and complex disabilities of persons with profound intellectual and multiple disabilities (PIMD) form a barrier for peer interactions and peer-directed behaviours. In this study, we further explore the nature of peer-directed behaviours in persons with PIMD and its relationship with social scaffolding behaviour of direct support workers (DSWs). Fourteen dyads of children with PIMD, who knew each other for at least 12 months, participated. They were sitting in close proximity while they were filmed with and without the presence of the DSW. Video recordings were coded continuously making use of observation schemes for the peer-directed behaviours of the children and the peer interaction influencing behaviours of the DSW. Significantly more singular peer-directed behaviour (without DSW: 18.00%; with DSW: 3.81%) was observed than multiple peer-directed behaviour (without DSW: 4.01%; with DSW: 0.52%). The amount of time the singular and multiple peer-directed behaviours were observed was significantly lower in the presence of a DSW. When the DSW shows peer interaction influencing behaviour, it was mostly social scaffolding behaviour (2.17%). The conditional probability of observing social scaffolding behaviour in the 10 s following on singular peer-directed behaviour was 0.02 with a Yule's Q of 0.04 and following on multiple peer-directed behaviour 0.04 with a Yule's Q of 0.33. The way in which peer interactions in children with PIMD are defined could have an impact on the amount of observed peer-directed behaviours and on the effect of the social scaffolding behaviours presented by DSW. © 2015 John Wiley & Sons Ltd.
Soorya, Latha; Leon, Jill; Trelles, M Pilar; Thurm, Audrey
Specialized strategies are needed to understand the complex neuropsychological impairments reported in individuals with profound intellectual and multiple disabilities (PIMD) associated with rare genetic disorders. This narrative review focuses on assessment of individuals with Phelan-McDermid Syndrome (PMS) as a condition commonly associated with PIMD. Published case series and prospective studies were reviewed to evaluate approaches to cognitive, language, motor/sensory, and behavioral domains. This review is framed using general principles for neuropsychological evaluation in PIMD. Neuropsychological assessment domains and tools varied across published reports. Adaptive behavior measures, out-of-range developmental assessments, and social-communication measures were commonly used. Available findings were used to shape a recommended framework with potential to improve measurement of clinical outcomes and advance scientific discovery. The recommended framework outlines an inter-disciplinary and multimodal neuropsychological assessment process relying on modified standardized assessments, functional assessments, and caregiver/informant reports when evaluating individuals with PIMD. Arrested development and skill variability/regression are also discussed as additional, important considerations in neuropsychological evaluation of individuals with PIMD and rare genetic disorders.
Axelsson, A K; Granlund, M; Wilder, J
Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared. A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test. Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities. Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning. © 2013 John Wiley & Sons Ltd.
McFerran, Katrina S.; Shoemark, Helen
Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenomenological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors’ construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts. PMID:23930986
McFerran, Katrina S; Shoemark, Helen
Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenomenological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors' construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts.
Seliner, Brigitte; Latal, Beatrice; Spirig, Rebecca
The aim of this study was to assess the effectiveness of a family-centered care (FCC) intervention provided by an advanced practice nurse (APN) for parents of children with profound disabilities undergoing surgery. In a quasi-experimental design, we used the MPOC-20 to assess satisfaction with FCC and interviews to identify potential mechanisms for improving satisfaction. There was a positive effect on the MPOC-20 domain "general information," albeit with a small effect size (Cohen's d = 0.35). The interviewed parents expected additional support. Emphasis should be placed on providing comprehensive care coordination by an experienced APN. Shared care management is crucial in improving FCC. © 2017 Wiley Periodicals, Inc.
One challenge to the concept of human dignity is that it is a rootless notion invoked simply to mask inequalities that inevitably exist between human beings. This privileging of humans is speciesist and its weak point is the profoundly disabled human being. This article argues that far from being a weak point, the profoundly disabled person is a source of strength and witness to the intrinsic dignity that all human beings have by virtue of being human. The disabled represent the reality of human existence that is both strong and fragile. Although human dignity can be understood philosophically its depth is rooted in Christian theological insights. The profoundly disabled occupy a privileged position and share in a theology of mission since they testify to the interdependence of every human being and human dependence on God to a myopic world that only values strength, autonomy and independence.
When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care.
Seliner, Brigitte; Latal, Bea; Spirig, Rebecca
We aimed to assess parental burden of care, satisfaction with family-centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors. A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital. The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health-related quality of life. Significant correlations with the hospitalized children's well-being were rs = .408 for burden of care and rs -.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well-being. Health professionals need to be aware of parental burden and that the perception of the children's well-being and the parents' efforts determine their support needs. Easing parents' burden and fostering confidence in the hospitalized children's well-being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration. © 2016, Wiley Periodicals, Inc.
Family-centredness of professionals who support people with profound intellectual and multiple disabilities: validation of the Dutch 'Measure of Processes of Care for Service Providers' (MPOC-SP-PIMD).
Jansen, Suzanne L G; van der Putten, Annette A J; Post, Wendy J; Vlaskamp, Carla
A Dutch version of the 'Measure of Processes of Care for Service Providers' (MPOC-SP) was developed to determine the extent to which professionals apply the principles of family-centred care in the rehabilitation of children with physical disabilities. However, no data were available on the reliability and construct validity of this instrument when it comes to supporting people with profound intellectual and multiple disabilities (PIMD). This study aimed to validate an adapted version of the Dutch MPOC-SP for assessing the family-centred behaviours of professionals who support this group (MPOC-SP-PIMD). A total of 105 professionals took part in the study. A Mokken scale analysis was conducted to determine whether the instrument satisfied the assumptions of both monotone homogeneity and double monotonicity. Loevinger's scalability coefficient (H) was used for the scalability of the entire scale and of each item separately. Rho was calculated as a measure of the internal consistency of the scales. The analyses resulted in two scales: a nine-item scale interpreted as 'Showing Interpersonal Sensitivity', with H=.39 and rho=.76, and a seven-item scale interpreted as 'Treating People Respectfully', with H=.49 and rho=.78. A validated version of the MPOC-SP-PIMD, suitable for supporting people with PIMD, consists of a subset of two scales from the original Dutch MPOC-SP. This instrument can be used to compare the family-centredness of professionals with parent's expectations and views. This information can be used in practice to match the support to the needs of the parents and family of the child with PIMD. Copyright © 2014 Elsevier Ltd. All rights reserved.
National Dissemination Center for Children with Disabilities, 2013
The term "multiple disabilities" is general and broad. From the term, you cannot tell how many disabilities a child has; which disabilities are involved; or how severe each disability is. Many combinations of disabilities are possible. The different disabilities will also have a combined impact. That is why it is also important to ask:…
“I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent
Vos, Pieter; De Cock, Paul; Munde, Vera; Neerinckx, Heleen; Petry, Katja; Van den Noortgate, Wim; Maes, Bea
Although it is shown that attention plays an important role both in the onset and in the regulation of emotions in people without disabilities there is no information about how attention is related to emotions in people with severe or profound intellectual disability (ID). Therefore, in our study,
This paper reports on several studies of gender mix among staff in ten schools for students with severe, profound and/or multiple disabilities. Headteachers' perceptions of the impact of women's dominance in these positions are explored, and a series of proposals for future recruitment and staff development is put forth. (Contains seven…
Chamot, Eric; Salter, Amber R.; Cutter, Gary R.; Bacon, Tamar E.; Herbert, Joseph
Objective: To create a reference table of disability outcomes in multiple sclerosis (MS) that would enable patients to rank their disability relative to others' with similar disease duration and to develop a cost-effective research tool for comparing MS severity across patient populations and time periods. Methods: The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry collects disability data from patients with MS on a validated, 9-point Patient-Determined Disease Steps (PDDS) scale. We compiled the Disability Expectancy Table, which displays cumulative frequencies of PDDS scores for each year of disease duration, from 0 to 45 years. We also tabulated disease duration–adjusted mean ranks of PDDS scores, referred to as Patient-derived MS Severity Scores (P-MSSS). Results: The cohort consisted of 27,918 NARCOMS enrollees, 72.7% of whom were female and 90.1% of whom were white. Mean age at symptom onset was 30.1 ± 10.1 years, and age at enrollment was 47.1 ± 11.0 years. The Disability Expectancy Table and P-MSSS afford a detailed overview of disability outcomes in a large MS cohort over a 45-year period. In the first year of disease, 15% of patients reported need of ambulatory aid, and 4% needed bilateral assistance or worse; after 45 years of disease, 76% of patients required ambulatory aid, and 52% bilateral assistance or worse. Proportion of patients who reported minimal or no interference in daily activities (PDDS ≤ 1) declined from 63% in the first year to 8% after 45 years of disease. Conclusion: The Disability Expectancy Table allows individual patients to determine how their disability ranks relative to NARCOMS enrollees with the same disease duration. P-MSSS may be used to compare disability across patient populations and to track disease progression in patient cohorts. P-MSSS does not require a formal neurologic examination and may therefore find wide applicability as a practical and cost-effective outcome measure in
Houwen, Suzanne; van der Putten, Annette; Vlaskamp, Carla
Background: It is generally agreed that motor activity promotes motor, cognitive, and social development, but the specific benefits in children with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to
Vos, P.; De Cock, P.; Petry, K.; Van Den Noortgate, W.; Maes, B.
Background: The measurement of subjective well-being in people with severe and profound intellectual disabilities (ID) is a difficult challenge. As they cannot self-report about their life satisfaction, because of severe communicative and cognitive limitations, behavioural observations of their emotions and moods are important in the measurement…
Siegel, Martin A.; Clapp, Elizabeth Jane
The 2 year project (July 1, 1978 through June 30, 1980) sought to determine the viability, attractiveness, and effectiveness of computer based instruction with approximately 225 severely and profoundly mentally handicapped and developmentally disabled institutionalized children and adults. Over 100 instructional formats were developed by staff…
Irene Hierro Zorrilla
Full Text Available The San Martín Scale is an instrument used to measure the quality of life of people with significant disabilities with adequate levels reliability and validity. In 2012, the San Martín Scale was administered to 85 adults with intellectual disabilities who were provided supports at Obra San Martin Foundation (Santander. In this article, we describe the results obtained at the mesosystem level, an example at the microsystem level, and future areas of work identified from the results.
Glick, N.R.; Fischer, M.H.; Heisey, D.M.; Leverson, G.E.; Mann, D.C.
Fractures are more prevalent among people with severe and profound developmental disabilities than in the general population. In order to characterize the tendency of these people to fracture, and to identify features that may guide the development of preventive strategies, we analyzed fracture epidemiology in people with severe and profound developmental disabilities who lived in a stable environment. Data from a 23-year longitudinal cohort registry of 1434 people with severe and profound developmental disabilities were analyzed to determine the effects of age, gender, mobility, bone fractured, month of fracture, and fracture history upon fracture rates. Eighty-five percent of all fractures involved the extremities. The overall fracture rate increased as mobility increased. In contrast, femoral shaft fracture risk was substantially higher in the least mobile [relative risk (RR), 10.36; 95% confidence interval (CI), 3.29-32.66] compared with the most mobile group. Although the overall fracture rate was not associated with age, the femoral shaft fractures decreased but hand/foot fractures increased with age. Overall fracture risk declined in August and September (RR, 0.70; 95% CI, 0.55-0.89), being especially prominent for tibial/fibular fractures (RR, 0.31; 95% CI, 0.13-0.70). Gender was not a factor in fracture risk. Two primary fracture mechanisms are apparent: one, largely associated with lack of weight-bearing in people with the least mobility, is exemplified by femoral fractures during non-traumatic events as simple as diapering or transfers; the other, probably due to movement- or fall-related trauma, is exemplified by hand/foot fractures in people who ambulate. The fracture experience of people with severe and profound developmental disabilities is unique and, because it differs qualitatively from postmenopausal osteoporosis, may require population-specific methods for assessing risk, for improving bone integrity, and for reduction of falls and accidents
Moss, Lucy; Smith, Melanie; Wharton, Sarah; Hames, Annette
Chronic constipation is a common problem in people with learning disabilities. Treatment often involves dietary changes or long-term laxative use. The participants were five children with profound learning disabilities and additional physical difficulties. Their long-standing idiopathic constipation was managed by laxatives. Intervention lasted up…
Full Text Available Background: The Western Cape Forum for Intellectual Disability took the South African Government to court in 2010 on its failure to implement the right to education for Children with Severe and Profound Intellectual Disability. Subsequently, multidisciplinary teams were appointed by the Western Cape Education Department to deliver services to the Special Care Centres (SCCs. Initially, minimal information was available on this population.Objectives: The purpose is to document the process of developing and validating a database for the collection of routine data.Method: A descriptive analytical study design was used. A sample of convenience was drawn from individuals under the age of 18 years, enrolled in SCCs in the Western Cape. The team who entered and analysed the data reached consensus regarding the utility and feasibility of each item.Results: Data were collected on 134 children. The omission of certain items from the database was identified. Some information was not reliable or readily available. Of the instruments identified to assess function, the classification systems were found to be reliable and useful, as were the performance scales. The WeeFIM, on the other hand, was lengthy and expensive, and was therefore discarded.Discussion and conclusions: A list of items to be included was identified. Apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. Without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed.
Vos, P.; De Cock, P.; Petry, K.; Van Den Noortgate, W.; Maes, B.
Background: Behavioural observations are the most frequently used source of information about emotions of people with severe or profound intellectual disabilities but have not yet been validated against other measures of emotion. In this study we wanted to validate the behavioural observations of emotions using respiration (rib cage contribution,…
Walton, Katherine M.; Ingersoll, Brooke R.
Social skills are important treatment targets for individuals with autism spectrum disorders (ASD) across the lifespan. However, few treatments are available for adolescents and adults with ASD who also have severe to profound intellectual disability (S/PID). Several social skill interventions have been described that may improve social skills in…
Freitag, Lisa; Liaschenko, Joan
The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley's rights, including a right to an intact, unaltered body, or on Ashley's parents' rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. We argue, however, that caregiving is a central issue in the controversy, as Ashley's need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called "holding." We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family's contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family "holding" for Ashley. Copyright 2017 The Journal of Clinical Ethics. All rights reserved.
Hanzen, Gineke; van Nispen, Ruth M A; van der Putten, Annette A J; Waninge, Aly
The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID. The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID. Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation. A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters. The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID. Copyright © 2016 Elsevier Ltd. All rights reserved.
Lindsay, W R; Pitcaithly, D; Geelen, N; Buntin, L; Broxholme, S; Ashby, M
This paper is an investigation into the efficacy of four therapeutic treatment procedures increasingly used with people with profound learning disabilities: snoezelen, hand massage/aromatherapy, relaxation, and active therapy (a bouncy castle). In particular, the effects of these procedures on concentration and responsiveness were examined. Eight subjects with profound learning disabilities took part in the study and each subject received each of the treatments. To assess the effects of the treatments, simple concentration tasks were administered and the subjects' responsiveness to each treatment was rated by independent observers. The results suggest that both snoezelen and relaxation had a positive effect on concentration and seemed to be the most enjoyable therapies for clients, whereas hand massage/aromatherapy and active therapy had no or even negative effects on concentration and appeared less enjoyable.
Bernstein, A M; Visconti, K J; Csorba, J; Radvanyi, K; Rojahn, J
We investigated whether current mood and interest/pleasure ratings in adults with moderate to profound intellectual disabilities were predictive of challenging behaviour [self-injurious behaviour (SIB), aggressive/destructive behaviour and stereotypic behaviour] and vice versa. In this combined cross-sectional and longitudinal study, staff members of a Hungarian residential facility completed translated versions of the Behaviour Problems Inventory-Short Form (BPI-S), the Challenging Behaviour Interview (CBI) and the Mood, Interest and Pleasure Questionnaire-Short Form (MIPQ-S) for 50 participants at two time points, approximately 4 to 5 months apart. Bivariate correlations from data concurrently assessed at Time-1 showed significant linear relationships between the SIB (both frequency and severity scores) and Interest/Pleasure sub-scales, and the Aggressive/Destructive Behaviour (severity scores) and the MIPQ-S Mood sub-scales (unadjusted for multiple correlations). All of these effects were found with the BPI-S data, but not with the CBI. Multiple regression analyses revealed that (1) low interest/pleasure assessed at Time-1 predicted high SIB (frequency and severity) at Time-2. (2) Interest/pleasure was not predictive of aggressive or stereotypic behaviour. (3) Mood at Time-1 did not predict any of the three types of behaviour problems at Time-2. (4) In reverse, high SIB (frequency and severity) at Time-1 predicted low interest/pleasure ratings at Time-2. (5) Surprisingly, frequent aggressive/destructive behaviour predicted high interest/pleasure. (6) Stereotypic behaviour scores at Time-1 did not predict interest/pleasure ratings at Time-2. Again, all of these effects were only found with the BPI-S data, but not with the CBI. Internal consistency, test-retest reliability and concurrent validity of the Hungarian versions of all three questionnaires had generally satisfactory outcomes. The fact that increasingly frequent and severe SIB was predicted by declining
D'Alessandro, Patrizia; Giuglietti, Marta; Baglioni, Antonella; Verdolini, Norma; Murgia, Nicola; Piccirilli, Massimo; Elisei, Sandro
Approximately one-third of patients with epilepsy continue to experience seizures despite adequate therapy with antiepileptic drugs. Drug-resistant epilepsy is even more frequent in subjects with intellectual disability. As a result, several non-pharmacological interventions have been proposed to improve quality of life in patients with intellectual disability and drug-resistant epilepsy. A number of studies have demonstrated that music can be effective at reducing seizures and epileptiform discharges. In particular, Mozart's sonata for two pianos in D major, K448, has been shown to decrease interictal EEG discharges and recurrence of clinical seizures in patients with intellectual disability and drug-resistant epilepsy as well. The aim of this study is to investigate the influence of Mozart's music on seizure frequency in institutionalized epileptic subjects with profound/severe intellectual disability. Twelve patients (10 males and 2 females) with a mean age of 21.6 years were randomly assigned to two groups in a cross-over design; they listened to Mozart K448 once a day for six months. A statistically significant difference was observed between the listening period and both baseline and control periods. During the music period, none of the patients worsened in seizure frequency; one patient was seizure-free, five had a greater than 50% reduction in seizure frequency and the remaining showed minimal (N=2) or no difference (N=4). The average seizure reduction compared to the baseline was 20.5%. Our results are discussed in relation to data in the literature considering differences in protocol investigation. Music may be considered a useful approach as add-on therapy in some subjects with profound intellectual disability and drug-resistant epilepsy and can provide a new option for clinicians to consider, but further large sample, multicenter studies are needed to better understand the characteristics of responders and non-responders to this type of non
Manresa-Yee, Cristina; Morrison, Ann; Larsen, Jeppe Veirum
V-Sense is a vibrotactile interface that encourages children with severe or profound cognitive, sensory and physical impairments to move. The interface makes use of touch, in particular vibrations, as a supportive function to motivate users' actions. Specifically, we propose a vibrotactile...... interface on the arm and around the shoulder using the saltation perceptual illusion to induce movement of the corresponding joint. In this paper we describe the design principles of the interface and the proposed experimental design to evaluate it....
This paper describes the development of Vibroacoustic Sound Therapy, an approach which is being developed for use in special schools for children with profound and multiple learning difficulties, and in long-term care homes for the elderly and the elderly mentally infirm. Using non-invasive techniques and music/sound technology, children and the elderly are being empowered and enabled to (re)discover self expression and communication skills. Two case studies drawn from the world of the young disabled, and from the elderly, illustrate the potential for improving quality of life and well-being in these institutional settings.
Tabacaru, Cristina Dumitru
The article aims to study ways of achieving human rights by offering everyone a voice, a communicational tool which will allow accessibility and access to quality education for all, regardless of the degree of disability. The main objective of the present study was to describe the profile of communication and study the use of verbal and nonverbal…
Hoevenaars-van den Boom, M.A.A.; Antonissen, A.C.F.M.; Knoors, H.E.T.; Vervloed, M.P.J.
In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are
Tunnicliffe, Penny; Oliver, Chris
The research literature notes both biological and operant theories of behavior disorder in individuals with intellectual disabilities. These two theories of genetic predisposition and operant reinforcement remain quite distinct; neither theory on its own is sufficient to explain challenging behavior in genetic syndromes and an integrated approach…
Belva, Brian C.; Matson, Johnny L.; Sipes, Megan; Bamburg, Jay W.
Previous research has shown that adults with intellectual disability (ID) evince communication deficits. These communication problems can be divided into problems with receptive, expressive, and written domains. While much research has been devoted to investigating communication deficits in ID in general, scant research has been conducted on…
Horovitz, Max; Matson, Johnny L.; Sipes, Megan; Shoemaker, Mary; Belva, Brian; Bamburg, Jay W.
Individuals with intellectual disability (ID) have a high risk for developing comorbid psychopathology. While researchers have shown that symptoms of psychopathology remain relatively stable in children with ID over time, little research has been conducted to demonstrate symptom stability for adults with ID. Incidence of psychopathology symptoms…
Watson, Joanne; Wilson, Erin; Hagiliassis, Nick
Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.…
Spike, Jeffrey P
Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness becomes permanently impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population.
Watson, Joanne; Wilson, Erin; Hagiliassis, Nick
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions. Five people with severe or profound intellectual disability's experiences of supported decision making were examined. This article is particularly focused on one participant's experiences at the end of his life. All five case studies identified that supporters were most effective in providing decision-making support for participants when they were relationally close to the person and had knowledge of the person's life story, particularly in relation to events that demonstrated preference. Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life. © 2017 John Wiley & Sons Ltd.
Full Text Available The purpose of this paper is to provide a preliminary, qualitative review of an approach to training centre-based carers in supporting basic communication development and providing communication opportunities for the children with severe and profound disabilities in their care. In South Africa, these children are often the most neglected in terms of planning and providing appropriate interventions. For those with severe communication disabilities, an additional lack is in the area of the basic human right to meaningful interactions and communication. Sustainable strategies to provide opportunities for basic communication development of these children are urgently sought. Several effective international and local parent training programmes have been developed, but the urgent need remains to train centre-based carers who are taking care of groups of diversely disabled children in severely under-resourced settings. Non-profit organisations (NPOs have been exploring practical centre-based approaches to skills sharing in physical rehabilitation, activities for daily living, feeding and support for basic communication development. As a freelance speech therapist contracted by four NPOs to implement hands-on training in basic communication for centre-based carers of non-verbal children, the author describes a training approach that evolved over three years, in collaboration with the carers and centre managements. Implications for training (for speech therapists and for community-based rehabilitation workers and for further research are identified.
Jackson, Jeffrey B; Roper, Susanne Olsen
Utilizing grounded theory qualitative research methods, a model was developed for describing parental adaptation after voluntary placement of a child with severe or profound developmental disabilities in out-of-home care. Interviews of parents from 20 families were analyzed. Parents' cognitive appraisals of placement outcomes were classified as either inducing emotional stress (i.e., guilt, sadness, fear and worry, anger and frustration, and uncertainty) or relief. Parental appraisals of responses to placement by children, extended family, and friends were identified as factors affecting the parents' adaptation to placement. The primary coping methods used by parents to decrease emotional stress and increase relief consisted of reappraisals regarding the necessity of placement, involvement in the child's life, psychotherapy, and the passage of time.
Jones, Phyllis; Riley, Michael W.
This article explores the perspectives of seven teachers in England who teach pupils with severe profound and multiple learning difficulties about their learning to teach this group of students. Teachers' views were captured through a combination of synchronous and asynchronous online communications. Four themes emerged from teachers' perspectives…
Mount, Helen; Cavet, Judith
This article addresses the controversy concerning multisensory environments for children and adults with profound and multiple learning difficulties, from a British perspective. The need for critical evaluation of such multisensory interventions as the "snoezelen" approach and the paucity of relevant, rigorous research on educational…
Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Buonocunto, Francesca; Sacco, Valentina; Colonna, Fabio; Navarro, Jorge; Lanzilotti, Crocifissa; de Pace, Claudia; Megna, Marisa; Oliva, Doretta
This study extended the assessment of a special messaging technology with two additional post-coma adults who had emerged from a minimally conscious state, but showed multiple disabilities including profound motor and communication impairments. For each participant, the study involved an ABAB design, in which the A represented baseline phases and…
Dijkhuizen, Annemarie; Hilgenkamp, Thessa I M; Krijnen, Wim P; van der Schans, Cees P; Waninge, Aly
The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and physical capacities. However, until recently, the impact of the significantly prevalent visual impairments on the performance of activities of daily living has not yet been revealed within this group. The purpose of this prospective cross-sectional study was to investigate the impact of visual impairment on the performance of activities of daily living for persons with a severe/profound intellectual disability. The Barthel Index (BI) and Comfortable Walking Speed (CWS) were used to measure the ability of performing activities of daily living (ADL) in 240 persons with severe/profound ID and having Gross Motor Functioning Classification System (GMFCS) levels I, II or III; this included 120 persons with visual impairment. The impact of visual impairment on ADL was analyzed with linear regression. The results of the study demonstrated that visual impairment slightly affects the ability of performing activities of daily living (BI) for persons experiencing a severe/profound intellectual disability. GMFCS Levels II or III, profound ID level, and visual impairment each have the effect of lowering BI scores. GMFCS Levels II or III, and profound ID level each have the effect of increasing CWS scores, which indicates a lower walking speed. A main effect of visual impairment is present on CWS, but our results do show a substantive interaction effect between GMFCS level III and visual impairment on Comfortable Walking Speed in persons with a severe/profound intellectual disability. Visual impairment has a slight effect on ability to perform ADL in persons experiencing severe/profound ID. Copyright © 2015 Elsevier Ltd. All rights reserved.
Full Text Available The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4, allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of
Dijkhuizen, Annemarie; Hilgenkamp, Thessa I. M.; Krijnen, Wim P.; Schans, van der Cees P.; Waninge, Aly
Background: The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and
Timmeren, van Dinette; van der Schans, C. P.; van der Putten, A. A. J.; Krijnen, W. P.; Steenbergen, H. A.; Lantman-de Valk, H. M. J. van Schrojenstein; Waninge, A.
BackgroundPeople with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect
Houwen, Suzanne; van der Putten, Annette; Vlaskamp, Carla
While if is generally agreed that motor activity promotes motor, cognitive, and social development, the specific benefits in people with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to motor
Vos, Pieter; De Cock, Paul; Munde, Vera; Petry, Katja; Van Den Noortgate, Wim; Maes, Bea
Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement…
Academic bioethics does not appear to be interested in communication and its ethical concerns unless communication is to do with issues such as capacity, consent, truth telling and confidentiality. In contrast practitioners are interested in actually communicating with their patients and they are often particularly perplexed when it comes to people with profound disabilities where communication appears disrupted. Although some new and not so new communication strategies, and especially intensive interaction, are available, little has been written on either the ethical concerns these may present or the deeper concepts that underpin them. This article explores the practical applications of some of these communication strategies. By engaging these strategies with theology, and specifically Pope John Paul's Theology of the Body, this article identifies and addresses some significant ethical issues that may arise, notably the risk of dualism and of objectifying the human person. Moreover it provides communication strategies with a rationale that goes beyond practicalities to one based on respect for human dignity, justice and solidarity.
Gauthier-Boudreault, Camille; Gallagher, Frances; Couture, Mélanie
At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present
Shih, Ching-Hsiang; Shih, Ching-Tien; Lin, Kun-Tsan; Chiang, Ming-Shan
This study assessed whether two people with profound multiple disabilities and minimal motor behavior would be able to control environmental stimulation using thumb poke ability with a mouse wheel and a newly developed mouse driver (i.e., a new mouse driver replacing standard mouse driver, and turning a mouse into a precise thumb poke detector).…
de Vaan, G; Vervloed, M; Peters-Scheffer, N C; van Gent, T; Knoors, H; Verhoeven, L
It is difficult to diagnose autism spectrum disorder (ASD) in people with a combination of intellectual and sensory disabilities because of overlap in behaviour. The ASD typical behaviours of people with combined intellectual and sensory disabilities are often caused by their disabilities and not by ASD. Current diagnostic tools are inadequate to differentiate between people with and without ASD when they have these combined disabilities, because tools lack norms for this population or are subjective, indirect or unable to adapt to the variety of disabilities that these people may have. Because giving a correct diagnosis is necessary for treatment and support, a new observational tool was developed to diagnose ASD in people with multiple disabilities, observation of autism in people with sensory and intellectual disabilities (OASID). Observation of autism in people with sensory and intellectual disabilities was tested on 18 participants with moderate to profound intellectual disabilities, one or dual sensory impairment, with and without ASD. Two independent experts diagnosed these participants as well in order to test the psychometric properties and differentiating abilities of OASID. Observation of autism in people with sensory and intellectual disabilities showed high inter-rater reliability, internal consistency of scales and content and construct validity. OASID could differentiate people with and without ASD without overlap. Observation of autism in people with sensory and intellectual disabilities could differentiate people with intellectual disabilities combined with sensory impairments, who clearly had or did not have signs of ASD. People with unclear signs of ADS scored in between those two groups with regard to their OASID scores. Psychometric properties of OASID are promising. © 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Full Text Available Abstract Background Global gene expression profiles of bovine kidney epithelial cells regulated by sodium butyrate were investigated with high-density oligonucleotide microarrays. The bovine microarray with 86,191 distinct 60mer oligonucleotides, each with 4 replicates, was designed and produced with Maskless Array Synthesizer technology. These oligonucleotides represent approximately 45,383 unique cattle sequences. Results 450 genes significantly regulated by butyrate with a median False Discovery Rate (FDR = 0 % were identified. The majority of these genes were repressed by butyrate and associated with cell cycle control. The expression levels of 30 selected genes identified by the microarray were confirmed using real-time PCR. The results from real-time PCR positively correlated (R = 0.867 with the results from the microarray. Conclusion This study presented the genes related to multiple signal pathways such as cell cycle control and apoptosis. The profound changes in gene expression elucidate the molecular basis for the pleiotropic effects of butyrate on biological processes. These findings enable better recognition of the full range of beneficial roles butyrate may play during cattle energy metabolism, cell growth and proliferation, and possibly in fighting gastrointestinal pathogens.
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Pichierri, Sabrina; Oliva, Doretta
Many persons with developmental and physical disabilities experience drooling (i.e., loss of saliva from the mouth). Technology was recently developed to help two of these persons reduce the negative effects of drooling by increasing mouth-wiping responses. This study upgraded our initial approach and tested it with the two persons who we…
Argyropoulos, Vassilios; Thymakis, Paraskevas
Children with visual and motor disabilities constitute a distinct group with a unique set of educational needs. Such children are often grouped with the broader population of children with multiple disabilities and visual impairments (that is, those who are blind or have low vision) (Erin, 2000; McLinden, 1997). The chief characteristic of…
Flynn, Samantha; Vereenooghe, Leen; Hastings, Richard P; Adams, Dawn; Cooper, Sally-Ann; Gore, Nick; Hatton, Chris; Hood, Kerry; Jahoda, Andrew; Langdon, Peter E; McNamara, Rachel; Oliver, Chris; Roy, Ashok; Totsika, Vasiliki; Waite, Jane
Mental health problems affect people with intellectual disabilities (ID) at rates similar to or in excess of the non-ID population. People with severe ID are likely to have persistent mental health problems. In this systematic review (PROSPERO 2015:CRD42015024469), we identify and evaluate the methodological quality of available measures of mental health problems or well-being in individuals with severe or profound ID. Electronic searches of ten databases identified relevant publications. Two reviewers independently reviewed titles and abstracts of retrieved records (n=41,232) and full-text articles (n=573). Data were extracted and the quality of included papers was appraised. Thirty-two papers reporting on 12 measures were included. Nine measures addressed a broad spectrum of mental health problems, and were largely observational. One physiological measure of well-being was included. The Aberrant Behavior Checklist, Diagnostic Assessment for the Severely Handicapped Scale-II and Mood, Interest and Pleasure Questionnaire are reliable measures in this population. However, the psychometric properties of six other measures were only considered within a single study - indicating a lack of research replication. Few mental health measures are available for people with severe or profound ID, particularly lacking are tools measuring well-being. Assessment methods that do not rely on proxy reports should be explored further. Copyright © 2017 Elsevier Ltd. All rights reserved.
Bouquier, L; Amand, M; Van Eecke, D
To study heart rate variability during sleep in children with multiple disabilities in order to observe the behavior of the autonomic nervous system. The R-R interval variability of 4 to 12 years old children was recorded with a heart rate monitor during one night. Children with multiple disabilities (G1) and healthy children (G2) were compared in time, frequency, and non-linear domains. Temporal (P0.05). The diseases encountered are probably the reason for these findings, but the variety of disorders and medications of the children with multiple disabilities needs to be studied with a larger and more varied sample. Sympathetic predominance during sleep in children with multiple disabilities is associated with a decrease in adaptive abilities of these children's autonomic nervous system. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
'It's pretty hard with our ones, they can't talk, the more able bodied can participate': staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities.
Bigby, C; Clement, T; Mansell, J; Beadle-Brown, J
The level of resident's adaptive behaviour and staff facilitative practices are key sources of variation in outcomes for residents in community-based residential services. The higher the resident support needs the poorer their outcome. Although substantial investment has been made in values-based training for staff, their attitudes and the impact of these on practice is largely unexplored. The first study used ethnographic and action research methods to examine the daily lives of 25 residents with severe and profound intellectual disabilities (ID), who lived in five small group homes, and the attitudes of the staff supporting them. Thematic analysis of the data led to a proposition that although staff accept principles of inclusion, choice and participation for people with ID in general, they do not consider it feasible to apply these to the people with severe and profound ID to whom they provide support. The findings from a second study that used a group comparison design and administered a short questionnaire about staff attitudes to 144 direct-care staff and first-line managers working in disability services confirmed this hypothesis. The study suggests more focused attention is needed to staff understanding the values embedded in current policies and their application to people with more severe disabilities.
Finlay, W M L; Antaki, Charles; Walton, Chris; Stribling, Penny
Games between staff and people with intellectual disabilities serve to promote social engagement and inclusion. However, when the person has limited and idiosyncratic communicative abilities, it may be hard to gauge what his/her own view of the matter is. We examine video-taped records of two episodes in which a staff member of a group home prompted a resident with profound intellectual disabilities to play a verbal and a non-verbal 'game'. We examine how the staff member in these two cases designs her actions to solve the dilemma she faces between, on the one hand, abandoning an activity when the resident does not provide clear indications that she/he wants to continue or, on the other hand, persisting with it until the resident begins to enjoy it or, at least, participate more fully. The solution lies in a pervasive institutional practice: treat resistance or ambiguity as temporary reluctance. We discuss these interactions as examples of how principles of empowerment, inclusion and independence play out in the details of everyday interaction.
Kishore, M Thomas
Understanding the disability impact on parenting and caregiving is important for intervention. The present study was designed to understand the differences in perceived disability impact and related coping in mothers having children with intellectual disabilities alone compared to those having children with intellectual disabilities and additional disabilities. Accordingly, 30 mothers of children with intellectual disabilities and 30 mothers of children with intellectual and additional disabilities were assessed for disability impact and coping. Group differences for disability impact were present in specific domains but not overall. Despite variations in coping pattern, both positive and negative coping strategies were observed in both groups. The results may imply that the impact of intellectual disability is so pervasive that except in certain domains mothers may not perceive the further impact of additional disabilities. Positive coping does not rule out negative coping strategies. These findings have specific relevance to service delivery in a cultural context.
Nganji, Julius T.; Brayshaw, Mike
Purpose: The purpose of this paper is to address how virtual learning environments (VLEs) can be designed to include the needs of learners with multiple disabilities. Specifically, it employs AI to show how specific learning materials from a huge repository of learning materials can be recommended to learners with various disabilities. This is…
Full Text Available The available clinical outcome measures of disability in multiple sclerosis are not adequately responsive or sensitive.To investigate the feasibility of inertial sensor-based gait analysis in multiple sclerosis.A cross-sectional study of 80 multiple sclerosis patients and 50 healthy controls was performed. Lower-limb kinematics was evaluated by using a commercially available magnetic inertial measurement unit system. Mean and standard deviation of range of motion (mROM, sROM for each joint of lower limbs were calculated in one minute walking test. A motor performance index (E defined as the sum of sROMs was proposed.We established two novel observer-independent measures of disability. Hip mROM was extremely sensitive in measuring lower limb motor impairment, being correlated with muscle strength and also altered in patients without clinically detectable disability. On the other hand, E index discriminated patients according to disability, being altered only in patients with moderate and severe disability, regardless of walking speed. It was strongly correlated with fatigue and patient-perceived health status.Inertial sensor-based gait analysis is feasible and can detect clinical and subclinical disability in multiple sclerosis.
Lancioni, Giulio E; O'Reilly, Mark F; Singh, Nirbhay N; Green, Vanessa A; Oliva, Doretta; Buonocunto, Francesca; Colonna, Fabio; Navarro, Jorge
To expand recently-developed text messaging systems with new technology-based solutions so as to allow persons with multiple disabilities to write messages. Two case studies were conducted. In Study I, the new technology-based solution involved vocal scanning of the alphabet letters to allow letter selection/writing and was assessed with a woman with blindness and extensive motor disability. In Study II, the new technology-based solution involved a touch-screen superimposed on letter symbols arranged alphabetically and was assessed with a man with acquired brain injury, motor disability and lack of speech. Each study involved an ABAB design. Participants learned to write their messages, to send them out and to listen to incoming messages during intervention sessions of nearly 30 and 20 minutes, respectively. Text messaging systems can be developed that allow participants with multiple disabilities to write messages.
Chan, J S L; Chien, W T
Recent literature has suggested that relaxation activities can reduce the challenging behaviours of people with intellectual disabilities, particularly in severe and profound grades, due to the counteractive effect of muscle relaxation on emotional frustration or psychological distress. Despite having inconclusive evidence, multisensory environment (MSE) and massage therapy (MT) are the commonly used approaches to relaxation among these people. However, these two approaches have not yet practised or tested in combination for reducing these people's challenging behaviours. A preliminary clinical efficacy trial was conducted to evaluate the effects of MT, MSE and their combined use for residents with intellectual disabilities in a long-term care facility on reducing their challenging behaviours. Eligible residents were recruited and randomly assigned to one of the four study groups (n = 11-12 per group), that is, MT in MSE, MSE alone, MT alone or usual care, for a 10-week intervention after a 1-month washout period. Outcome measures, including the Behaviour Problem Inventory, pulse and respiration rates, Behaviour Checklist and Alertness Observation Checklist, were assessed at recruitment and immediately following the interventions. A total of 42 participants (17 men and 25 women) completed the study. There were no significant differences in frequency and severity of challenging behaviours and most of the outcome measures between the four groups at post-test. Nevertheless, there were statistical significant differences on the active and inactive state (Alertness Observation Checklist) between the three treatment and control groups. Many participants in the three treatment groups changed from an active to inactive state (i.e. reduced activity levels) throughout the interventions, especially the MT in MSE. Such inactivity might suggest the participants' brief exhaustion followed by a period of alertness during the treatment activities. But their attention span and
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Perilli, Viviana; Laporta, Dominga; Campodonico, Francesca; Oliva, Doretta; Groeneweg, Jop
These two studies were aimed at assessing technology-aided programs to help persons with multiple disabilities engage in basic occupation or work activities. Specifically, Study I focused on teaching two participants (an adolescent and an adult) with low vision or total blindness, severe/profound intellectual disabilities, and minimal object interaction to engage in constructive object-manipulation responses. The technology monitored their responses and followed them with brief stimulation periods automatically. Study II focused on teaching three adults with deafness, severe visual impairment, and profound intellectual disabilities to perform a complex activity, that is, to assemble a five-component water pipe. The technology regulated (a) light cues to guide the participants through the workstations containing single pipe components and the carton for completed pipes and (b) stimulation events. The results of both studies were positive. The participants of Study I showed consistent and independent engagement in object-manipulation responses. The participants of Study II showed consistent and independent pipe assembling performance. General implications of the two programs and the related technology packages for intervention with persons with multiple disabilities are discussed. Copyright © 2014 Elsevier Ltd. All rights reserved.
Cohen, Jeffrey A; Reingold, Stephen C; Polman, Chris H
Many of the available disability outcome measures used in clinical trials of multiple sclerosis are insensitive to change over time, inadequately validated, or insensitive to patient-perceived health status or quality of life. Increasing focus on therapies that slow or reverse disability...... progression makes it essential to refine existing measures or to develop new tools. Major changes to the expanded disability status scale should be avoided to prevent the loss of acceptance by regulators as a measure for primary outcomes in trials that provide substantial evidence of effectiveness. Rather, we...... recommend practical refinements. Conversely, although substantial data support the multiple sclerosis functional composite as an alternative measure, changes to its component tests and scoring method are needed. Novel approaches, including the use of composite endpoints, patient-reported outcomes...
Henry, Wilma J.; Fuerth, Katherine; Figliozzi, Jennifer
Traditionally, student issues regarding disability and sexuality have been viewed and addressed in isolation on college campuses. However, students with multiple minority identities are in need of services and personnel that are responsive to their unique needs as members of two historically oppressed minority groups. This qualitative exploration…
Wilkens, Christian P.; Kuntzler, Patrice M.; Cardenas, Shaun; O'Malley, Eileen; Phillips, Carolyn; Singer, Jacqueline; Stoeger, Alex; Kindler, Keith
One challenge teachers of students with orthopedic and multiple disabilities face is providing sufficient time and opportunity to communicate. This challenge is universal across countries, schools, and settings: teachers want students to communicate because communication lies at the core of what makes us human. Yet students with orthopedic and…
The author outlines the history, current situation, and the future of the care and support system for people with intellectual and multiple disabilities in Japan. He describes how the service system has been shaped from within by Japanese legislation dating back to the Child Welfare Act of 1947, and how international events such as the…
This CD-ROM disk contains a curriculum on vector communication for students with moderate and severe multiple disabilities. Section 1 discusses pragmatic communication, functional analysis of behavior, augmentative and alternative communication, including gestures and signs, use of pictures and pictographs, and low, medium, and high tech…
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Perilli, Viviana; Campodonico, Francesca
People with severe/profound multiple (e.g., intellectual, motor, or sensory-motor) disabilities are frequently restricted to a situation of inactivity and dependence, which may be modified by promoting functional activity engagement through assistive technology. This study assessed the possibility of promoting functional activity engagement via microswitch-aided programs with nine participants with multiple disabilities between 10 and 29 years of age. Functional activity consisted of constructive interaction with the immediate environment (e.g., reaching/touching or putting away objects) through the use of response schemes considered practical and beneficial for the participants' physical exercise and general condition. Microswitch-aided programs were used to monitor the participants' responses and to automatically provide stimulation opportunities contingent on those responses. All participants had a large/significant increase in their activity engagement (i.e., response frequencies) during the microswitch-aided programs, when compared to the baseline periods. These data, which are in line with previous findings in the area, indicate that the programs targeted activity and responses suitable for the participants and ensured contingent stimulation effective to motivate them. People with severe/profound multiple disabilities can engage in functional activity with the help of microswitch-aided programs.
Schalen, Gertruud Henrike; van der Putten, Annette; Maes, Bea; Vlaskamp, Carla
Aim: Early motor stimulation may be valuable for children with profound intellectual and multiple disabilities (PIMD), however limited knowledge of their typical motor developmental trajectory may be currently restraining the efficacy and specificity of this intervention. Research on young children
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures...
Discussing the question, which elements on the path are to be considered profound. While a general view is that the most subtle practises are also the most profound, 'Jig-rten-mgon-po maintains that the most fundamental one's are to be considered the most profound.......Discussing the question, which elements on the path are to be considered profound. While a general view is that the most subtle practises are also the most profound, 'Jig-rten-mgon-po maintains that the most fundamental one's are to be considered the most profound....
Guardino, Caroline A.
Students with a hearing loss often have an additional disability. Although the number of deaf students with multiple disabilities is growing, research on this population has significantly decreased over the past quarter-century. The article reviews the literature on identification and placement of deaf students with multiple disabilities,…
Hearne, D; Stone, S
The field of learning disabilities, like education in the main, is undergoing calls for reform and restructuring, an upheaval brought on in great part by the forces of opposing paradigms--reductionism and constructivism. In reexamining our past, we must begin to address the failures of traditional deficit models and their abysmally low "cure" rate. Several new theories have arisen that challenge traditional practices in both general and special education classrooms. Particularly influential has been the work of Howard Gardner, whose theory of multiple intelligences calls for a restructuring of our schools to accommodate modes of learning and inquiry with something other than deficit approaches. At least some current research in the field of learning disabilities has begun to focus on creativity and nontraditional strengths and talents that have not been well understood or highly valued by the schools. In this article, we briefly summarize the findings in our search for the talents of students labeled learning disabled, evidence of their abilities, implications of these for the schools, and a beginning set of practical recommendations.
Juan Ignacio Rojas
Full Text Available The aim of this study was to investigate if brain atrophy in multiple sclerosis (MS patients during the disease onset predicts long term disability. METHODS: MS patients with follow-up time of at least 7 years from disease onset and with baseline and second magnetic resonance 12 months later were included to measure brain atrophy. Expanded Disability Status Scale (EDSS was categorized in three groups, EDSS=0, EDSS=1 and 2.5 and EDSS>2.5, and used as disability measure. RESULTS: Twenty-six patients were included. Mean atrophy during the first year in patients that reached an EDSS≥3 was -0.76±0.45 %, in patients with an EDSS between 1 and 2.5 was -0.59±0.56, while in patients with an EDSS of 0 it was -0.38±0.42 (p=0.003. DISCUSSION: Brain atrophy rates during the first year of disease were predictive of disease progression in our population.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Campodonico, Francesca; Perilli, Viviana; Chiariello, Valeria; Zimbaro, Carmen
Persons with severe/profound intellectual and multiple disabilities tend to be passive and sedentary. Promoting their occupational engagement and mobility (i.e., indoor walking) can help to modify their condition and improve their environmental input, health, and social image. This study assessed whether a technology-aided program was suitable to (a) support independent occupation and mobility in eight participants with intellectual and sensory disabilities and (b) eventually increase the participants' heart rates to levels considered beneficial for them. The program, which involved a computer system regulating the presentation of auditory or visual cues and the delivery of preferred stimulation, was introduced according to a non-concurrent multiple baseline design across participants. The auditory or visual cues guided the participants to collect objects from different desks and to transport them to a final destination (i.e., depositing them into a carton). Preferred stimulation was available to the participants for collecting and for depositing the objects. During the program, all participants had an increase in their independent responses of collecting objects and transporting them to the final destination. Their heart rates also increased to levels reflecting moderate-intensity physical exercise, potentially beneficial for their health. A program, such as that used in this study, can promote occupational engagement and mobility in persons with multiple disabilities.
Giulio E. Lancioni
Full Text Available BackgroundPersons with severe/profound intellectual and multiple disabilities tend to be passive and sedentary. Promoting their occupational engagement and mobility (i.e., indoor walking can help to modify their condition and improve their environmental input, health, and social image.AimThis study assessed whether a technology-aided program was suitable to (a support independent occupation and mobility in eight participants with intellectual and sensory disabilities and (b eventually increase the participants’ heart rates to levels considered beneficial for them.MethodThe program, which involved a computer system regulating the presentation of auditory or visual cues and the delivery of preferred stimulation, was introduced according to a non-concurrent multiple baseline design across participants. The auditory or visual cues guided the participants to collect objects from different desks and to transport them to a final destination (i.e., depositing them into a carton. Preferred stimulation was available to the participants for collecting and for depositing the objects.ResultsDuring the program, all participants had an increase in their independent responses of collecting objects and transporting them to the final destination. Their heart rates also increased to levels reflecting moderate-intensity physical exercise, potentially beneficial for their health.ConclusionA program, such as that used in this study, can promote occupational engagement and mobility in persons with multiple disabilities.
Kimura, Miyako; Yamazaki, Yoshihiko
In this study, we explored the lived experience of Japanese mothers who have delivered multiple children with intellectual disabilities (ID), using interpretative phenomenological analysis. We identified three superordinate themes and seven subordinate themes from the narrative data collected from 10 participants. The superordinate themes were: abandoned hope for having an ordinary family, accumulating physical and mental fatigue, and searching for positive experiences in parenting multiple children with disabilities. How they perceived the birth of children with disabilities for the second time differed depending on the disability types; specifically, whether they detected the disabilities early or not. Encountering the disability in another child overwhelmed mothers, especially when the disabilities were diagnosed after several years with or without suspicion; they struggled to accept the fact. Despite mothers facing extreme difficulties in parenting multiple children with disabilities, they tried to alter the negative perceptions and find an optimistic way of living.
Cox, Amy L.; Gast, David L.; Luscre, Deanna; Ayres, Kevin M.
The purpose of this study was to evaluate the impact of weighted vests on the amount of time 3 elementary-age students with autism, intellectual disabilities, and sensory processing abnormalities engaged in appropriate in-seat behavior. An alternating treatments design was used to examine the duration of appropriate in-seat behavior under three…
Tremlett, Helen; Paty, Donald; Devonshire, Virginia
To investigate disease progression and risk factors in a large geographically based population with multiple sclerosis (MS), using two different inception points--clinical onset and date of birth. The authors reviewed a database of subjects with definite MS and symptom onset prior to July 1988. The main outcome was sustained progression to Expanded Disability Status Scale (EDSS) 6 (requires a cane), using the date of birth and date of MS onset as inception points in separate analyses. Risk factors examined were sex, relapsing vs primary progressive course, onset age, and onset symptoms. The study included 2,837 patients, followed prospectively for 22,723 patient years. The median time to EDSS 6 was 27.9 years, 15 years after onset; only 21% reached EDSS 6, and by age 50, 28% required a cane. Men progressed 38% more quickly than women from onset (p men and 60.1 for women (p = 0.082). A younger onset age predicted a slower progression, but those older at onset were consistently older when reaching EDSS 6. A primary progressive course predicted a more rapid progression from both onset (p multiple sclerosis (MS) accrued more slowly than found in earlier longitudinal studies. The authors also challenged two fundamental concepts in MS, demonstrating that neither male sex nor older onset age was associated with worse disease outcome.
Lee, Cynthia D.
This study investigated the results of employing shared story reading during literacy instruction for participants with severe and multiple disabilities. This intervention was conducted in an effort to improve independent responses made by participants with severe and multiple disabilities within a small group on a task analysis during shared…
Kemp, Coral; Stephenson, Jennifer; Cooper, Megan; Hodge, Kerry
A single subject multiple treatment design was used to compare the engagement of 3 preschool children with severe and multiple disabilities, using 2 different stimuli: picture books and iPad apps matched for theme and content. Two of the 3 children had diagnoses of autism spectrum disorder in addition to their other disabilities. Sessions for each…
Parrish, Rosalie N.
This qualitative study proposed to answer the following two questions: Do mothers of children who have multiple disabilities experience feelings that are consistent with chronic sorrow?, and What are mothers' perceptions of the chronic sorrow phenomenon? Seven biological mothers of children who have multiple disabilities were interviewed on two…
Fenlon, Amanda G.; McNabb, Jessica; Pidlypchak, Harmony
Children with multiple disabilities, often experience challenges in communication, mobility, and learning. Despite these challenges, substantial research exists that documents successful educational methods and strategies for these students. Specifically, students with multiple disabilities have successfully been taught to use a voice output…
Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Green, Vanessa A.; Oliva, Doretta; Alberti, Gloria; Carrella, Luigina
This study extended the research on a special text messaging system, which allows persons with multiple disabilities to (a) write and send messages to distant partners and (b) have messages from those partners read out to them. The study involved two women with multiple disabilities (including blindness or minimal residual vision). The system…
Nunes, Clarisse; Miranda, Guilhermina Lobato; Amaral, Isabel
This study aimed to analyze how the Social Software tools could respond to the needs of parents and teachers of students with multiple disabilities in improving their practices, as well as provide information and resources related to the topic of multiple disabilities. The study was implemented in Portugal and involved 45 participants: 25 special…
... Evaluations; Service Connection § 3.324 Multiple noncompensable service-connected disabilities. Whenever a... 38 Pensions, Bonuses, and Veterans' Relief 1 2010-07-01 2010-07-01 false Multiple noncompensable service-connected disabilities. 3.324 Section 3.324 Pensions, Bonuses, and Veterans' Relief DEPARTMENT OF...
Schuengel, C; Sterkenburg, P S; Jeczynski, P; Janssen, C G C; Jongbloed, G
: In a controlled multiple case design study, the development of a therapeutic relationship and its role in affect regulation were studied in 6 children with visual disabilities, severe intellectual disabilities, severe challenging behavior, and prolonged social deprivation. In the 1st phase,
Schuengel, C.; Sterkenburg, P.S.; Jeczynski, P.; Janssen, C.G.C.; Jongbloed, G.
In a controlled multiple case design study, the development of a therapeutic relationship and its role in affect regulation were studied in 6 children with visual disabilities, severe intellectual disabilities, severe challenging behavior, and prolonged social deprivation. In the 1st phase, children
Chen, Kelong; Fan, Yongping; Hu, Rui; Yang, Tao; Li, Kangning
The aim of this work is to investigate and analyze the main factors that influence the quality of life (QOL) of multiple sclerosis (MS) patients. The QOL (multiple sclerosis impact scale), disability (expanded disability status scale), fatigue (modified fatigue impact scale) and depression (Beck Depression Inventory) were assessed in 100 MS patients. Correlation analysis shows that QOL is positively correlated with disability status, fatigue and depression, i.e., the more severe the disability, fatigue and depression, the worse the QOL. Multiple linear regression analysis indicated that Expanded Disability Status Scale grade and fatigue have important predictive value on the somatic QOL of MS patients. On the other hand, depression and fatigue have important predictive value on the mental QOL of MS patients. The QOL of MS patients is influenced by various factors, nursing care that focuses on patient disability, fatigue and depression should be strengthened. Copyright © 2012 John Wiley & Sons, Ltd.
Kimura, Miyako; Yamazaki, Yoshihiko
To investigate how having a child without a disability is related to maternal mental health and its predictors, we compared mothers of a single child with intellectual disabilities (single-child group, n = 117) and mothers of children with and without intellectual disabilities (multiple-children group, n = 457), in Japan. Compared to the multiple-children group, the single-child group had lower hope and social capital and poorer mental health; furthermore, 42.5% of them had decided not to have another child, despite desiring one. Hope was the strongest predictor of mental health in both groups but was more positively related to mental health in the multiple-children group. The fear of the possibility of the next child having a disability and receiving inadequate support were the obstacles for mothers who had decided not to have another child. Thus, greater support and more opportunities for obtaining adequate information about the implications of having another child may be needed.
Martinez-Lapiscina, Elena H; Arnow, Sam; Wilson, James A
of disability worsening in a cohort of patients with multiple sclerosis who had at least one eye without optic neuritis available. METHODS: In this multicentre, cohort study, we collected data about patients (age ≥16 years old) with clinically isolated syndrome, relapsing-remitting multiple sclerosis......, and progressive multiple sclerosis. Patients were recruited from centres in Spain, Italy, France, Germany, Czech Republic, Netherlands, Canada, and the USA, with the first cohort starting in 2008 and the latest cohort starting in 2013. We assessed disability worsening using the Expanded Disability Status Scale...... (n=74), relapsing-remitting multiple sclerosis (n=664), or progressive multiple sclerosis (n=141) were included in the primary analyses. Disability worsening occurred in 252 (29%) of 879 patients with multiple sclerosis after a median follow-up of 2·0 years (range 0·5-5 years). Patients with a p...
Manresa-Yee, Cristina; Morrison, Ann; Jordi Muntaner, Joan
Designing and evaluating interactive systems for users with multiple disabilities is a challenge due to their cognitive, sensory, physical and behavioral conditions. Vibrotactile interfaces to motivate users’ actions exist for users with hearing and sight impairments, but there are hardly any...... for users with multiple disabilities. We developed V-Sense, a vibrotactile interface that encourages children with multiple disabilities to move their arms by using vibrations and exploiting the saltation perceptual illusion. In this paper we describe our initial experience evaluating the interface with 5...... children for 7 weeks and we discuss the first insights concerning the use of the interface and the difficulties encountered while conducting the evaluation sessions....
Leray, Emmanuelle; Yaouanq, Jacqueline; Le Page, Emmanuelle; Coustans, Marc; Laplaud, David; Oger, Joël
It is well documented that disability accumulation in multiple sclerosis is correlated with axonal injury and that the extent of axonal injury is correlated with the degree of inflammation. However, the interdependence between focal inflammation, diffuse inflammation and neurodegeneration, and their relative contribution to clinical deficits, remains ambiguous. A hypothesis might be that early focal inflammation could be the pivotal event from which all else follows, suggesting the consideration of multiple sclerosis as a two-stage disease. This prompted us to define two phases in the disease course of multiple sclerosis by using two scores on the Kurtzke Disability Status Scale as benchmarks of disability accumulation: an early phase, ‘Phase 1’, from multiple sclerosis clinical onset to irreversible Disability Status Scale 3 and a late phase, ‘Phase 2’, from irreversible Disability Status Scale 3 to irreversible Disability Status Scale 6. Outcome was assessed through five parameters: Phase 1 duration, age at Disability Status Scale 3, time to Disability Status Scale 6 from multiple sclerosis onset, Phase 2 duration and age at Disability Status Scale 6. The first three were calculated among all patients, while the last two were computed only among patients who had reached Disability Status Scale 3. The possible influence of early clinical markers on these outcomes was studied using Kaplan–Meier estimates and Cox models. The analysis was performed in the Rennes multiple sclerosis database (2054 patients, accounting for 26 273 patient-years) as a whole, and according to phenotype at onset (1609 relapsing/445 progressive onset). Our results indicated that the disability progression during Phase 2 was independent of that during Phase 1. Indeed, the median Phase 2 duration was nearly identical (from 6 to 9 years) irrespective of Phase 1 duration (multiple sclerosis, gender, age at onset, residual deficit after the first relapse and relapses during the first 2
MacKenzie-Graham, A; Kurth, F.; Itoh, Y.; Wang, H-J; Montag, MJ; Elashoff, R.; Voskuhl, RR
Multiple sclerosis (MS) is characterized by progressive gray matter (GM) atrophy that strongly correlates with clinical disability. However, whether localized GM atrophy correlates with specific disabilities in patients with MS remains unknown.To understand the association between localized GM atrophy and clinical disability in a biology-driven analysis of MS.In this cross-sectional study, magnetic resonance images were acquired from 133 women with relapsing-remitting MS and analyzed using vo...
O'Mea, Melanie L.
Working with children who have multiple disabilities that include visual impairments can be especially challenging. Many disabling conditions manifest into behavioral difficulties that may take away from learning. Acting out may be a student's way of expressing a lack of healthy coping mechanisms in relation to his or her environment. Implementing…
Bouck, Emily C.; Bassette, Laura; Taber-Doughty, Teresa; Flanagan, Sara M.; Szwed, Kathryn
The effectiveness of a pentop computer when teaching multiplication facts to three middle school students with mild intellectual disabilities was examined. A multiple probe design was used to assess the students learning of one and two digit multiplication facts over a 2-3 week intervention period. During the intervention phase, students used a…
D'hooghe, Marie Beatrice; Nagels, Guy; De Keyser, Jacques; Haentjens, Patrick
Background: Health behavior may be associated with disability progression in multiple sclerosis (MS). Objectives: To investigate health-promoting behavior as measured by the Health-Promoting Lifestyle Profile II, which includes the subscales of health responsibility, physical activity, nutrition,
Brooks, Tony; Petersson, Eva; Hasselblad, Stefan
This paper reflects upon a case study where exploration, play and empowerment in interactive therapy sessions with audio and visual stimuli resulted in achievement, self-esteem and a shared pride between a young adult with profound and multiple learning disabilities (PMLD), his mother and the spe......This paper reflects upon a case study where exploration, play and empowerment in interactive therapy sessions with audio and visual stimuli resulted in achievement, self-esteem and a shared pride between a young adult with profound and multiple learning disabilities (PMLD), his mother...
Flores, Margaret M.; Hinton, Vanessa M.; Schweck, Kelly B.
The Common Core Standards require demonstration of conceptual knowledge of numbers, operations, and relations between mathematical concepts. Supplemental instruction should explicitly guide students with specific learning disabilities (SLD) in these skills. In this article, we illustrate implementation of the concrete-representational-abstract…
The No Child Left Behind Act of 2001 and the Individuals with Disabilities Improvement Education Act of 2004 stress the importance of giving every child access to the general education curriculum. The Reading First program, under the No Child Left Behind Act, aimed to establish evidence-based literacy instruction for all students in kindergarten…
MacKenzie-Graham, Allan; Kurth, Florian; Itoh, Yuichiro; Wang, He-Jing; Montag, Michael J; Elashoff, Robert; Voskuhl, Rhonda R
Multiple sclerosis (MS) is characterized by progressive gray matter (GM) atrophy that strongly correlates with clinical disability. However, whether localized GM atrophy correlates with specific disabilities in patients with MS remains unknown. To understand the association between localized GM atrophy and clinical disability in a biology-driven analysis of MS. In this cross-sectional study, magnetic resonance images were acquired from 133 women with relapsing-remitting MS and analyzed using voxel-based morphometry and volumetry. A regression analysis was used to determine whether voxelwise GM atrophy was associated with specific clinical deficits. Data were collected from June 28, 2007, to January 9, 2014. Voxelwise correlation of GM change with clinical outcome measures (Expanded Disability Status Scale and Multiple Sclerosis Functional Composite scores). Among the 133 female patients (mean [SD] age, 37.4 [7.5] years), worse performance on the Multiple Sclerosis Functional Composite correlated with voxelwise GM volume loss in the middle cingulate cortex (P disability (P = .03). Thus, deficits in specific clinical test results were directly associated with localized GM loss in clinically eloquent locations. These biology-driven data indicate that specific disabilities in MS are associated with voxelwise GM loss in distinct locations. This approach may be used to develop disability-specific biomarkers for use in future clinical trials of neuroprotective treatments in MS.
Wynia, K; Middel, B; van Dijk, J P; De Keyser, J H A; Reijneveld, S A
People with Multiple Sclerosis (MS) experience lower levels of quality of life (QOL) than people from the general population. We examined the relative impact of MS-related disabilities on QOL. Data were obtained from a sample of 530 patients who completed the Multiple Sclerosis Impact Profile (MSIP), a disability measure based on the International Classification of Functioning, Disabilities and Health (ICF) and two generic health-related QOL measures, the Medical Outcome study Short Form Questionnaire (SF-36) and the World Health Organization Quality Of Life-BREF (WHOQOL-BREF). The impact of disabilities on QOL was estimated using hierarchical multiple regression analyses after controlling for the clinical course of MS. Disabilities contributed to a unique and substantial extent to QOL variance. "Impairments in mental functions" was the most important QOL predictor. "Fatigue" showed the highest prevalence and severity scores, while the impact on QOL was limited. The estimated impact on QOL appeared to be dependent on the applied QOL measure: the WHOQOL-BREF was sensitive to disabilities related to all four ICF components, while the SF-36 was only sensitive to disabilities belonging to the 'body functions' and 'activities' components. Treatment programmes should target impairments in cognitive functioning, emotional functioning and sleep. Interventions are best evaluated using the WHOQOL-BREF.
Wynia, K.; Middel, B.; van Dijk, J. P.; De Keyser, J. H. A.; Reijneveld, S. A.
Objective People with Multiple Sclerosis (MS) experience lower levels of quality of life (QOL) than people from the general population. We examined the relative impact of MS-related disabilities on QOL. Method Data were obtained from a sample of 530 patients who completed the Multiple Sclerosis
Dogonowski, Anne-Marie; Siebner, Hartwig Roman; Soelberg Sørensen, P.
Objective To characterize the relationship between motor resting-state connectivity of the dorsal pre-motor cortex (PMd) and clinical disability in patients with multiple sclerosis (MS). Materials and methods A total of 27 patients with relapsing–remitting MS (RR-MS) and 15 patients with secondary...... progressive MS (SP-MS) underwent functional resting-state magnetic resonance imaging. Clinical disability was assessed using the Expanded Disability Status Scale (EDSS). Independent component analysis was used to characterize motor resting-state connectivity. Multiple regression analysis was performed in SPM8...... of left PMd showed a positive linear relation with clinical disability in patients with MS. This effect was stronger when considering the group of patients with RR-MS alone, whereas patients with SP-MS showed no increase in coupling strength between left PMd and the motor resting-state network...
Full Text Available Background and Aim: Multiple sclerosis (MS is characterized with inflammation, demyelization and gliosis. It may be relapsing, remitting, or progressive. Cognitive impairment is relatively prevalent in patients wit h multiple sclerosis and as duration of disease is longer as cognition impairment is more. To understand the cognitive impairment, event related potential can be considered as a valuable tool. This study aimed to investigate the influence of duration of disease and expanded disability status scale (EDSS on the amplitude and latency of the event related potentials of P300 in patients with multiple sclerosis. Methods: In this cross-sectional and non-intervention study, 21 patients with multiple sclerosis with mean age of 27.8 with SD 7.1 years (between 18 to 50 years were enrolled. The patients were selected randomly. The correlation of P300 event-related potential and oddball paradigm was assessed, using two 1000 and 2000 Hz tone burst stimulus. Results: There was a significant correlation between the latency of P300 wave and duration of disease and expanded disability status scale (p 0.50. The correlation of amplitude of P300 and duration of disease and expanded disability status scale was not significant (p>0.05. Conclusion: Significant correlation between the latency of P300 and the duration of multiple sclerosis and expanded disability status scale can be a sign of central nervous system changes. Besides, there is a relation between physical disability and cognitive impairments.
Skjerbæk, Ag; Næsby, M; Lützen, Karin
This study tested whether upper-body endurance training (ET) is feasible and can be performed at sufficient intensity to induce cardiovascular adaptations in severely disabled patients with progressive multiple sclerosis (MS). Eleven progressive MS patients (6.5 ≤ EDSS ≤ 8.0) scheduled for a four...... was seen for VO2peak (p = 0.06). ET is feasible in severely disabled patients with progressive MS and it can probably be performed at sufficient intensity to induce cardiovascular adaptations....
Marrie, Ruth Ann; Cutter, Gary; Tyry, Tuula
Visual comorbidities are common in multiple sclerosis (MS) but the impact of visual comorbidities on visual disability is unknown. We assessed the impact of visual and vascular comorbidities on severity of visual disability in MS. In 2006, we queried participants of the North American Research Committee on Multiple Sclerosis (NARCOMS) about cataracts, glaucoma, uveitis, hypertension, hypercholesterolemia, heart disease, diabetes and peripheral vascular disease. We assessed visual disability using the Vision subscale of Performance Scales. Using Cox regression, we investigated whether visual or vascular comorbidities affected the time between MS symptom onset and the development of mild, moderate and severe visual disability. Of 8983 respondents, 1415 (15.9%) reported a visual comorbidity while 4745 (52.8%) reported a vascular comorbidity. The median (interquartile range) visual score was 1 (0-2). In a multivariable Cox model the risk of mild visual disability was higher among participants with vascular (hazard ratio [HR] 1.45; 95% confidence interval [CI]: 1.39-1.51) and visual comorbidities (HR 1.47; 95% CI: 1.37-1.59). Vascular and visual comorbidities were similarly associated with increased risks of moderate and severe visual disability. Visual and vascular comorbidities are associated with progression of visual disability in MS. Clinicians hearing reports of worsening visual symptoms in MS patients should consider visual comorbidities as contributing factors. Further study of these issues using objective, systematic neuro-ophthalmologic evaluations is warranted.
Full Text Available There is an unmet need for disease-modifying therapies to improve ambulatory function in disabled subjects with multiple sclerosis.Assess the effects of natalizumab on ambulatory function in disabled subjects with relapsing-remitting multiple sclerosis (RRMS or secondary progressive multiple sclerosis (SPMS.We retrospectively reviewed ambulatory function as measured by timed 25-foot walk (T25FW in clinical trial subjects with an Expanded Disability Status Scale score ≥3.5, including RRMS subjects from the phase 3 AFFIRM and SENTINEL trials, relapsing SPMS subjects from the phase 2 MS231 study, and nonrelapsing SPMS subjects from the phase 1b DELIVER study. For comparison, SPMS subjects from the intramuscular interferon beta-1a (IM IFNβ-1a IMPACT study were also analyzed. Improvement in ambulation was measured using T25FW responder status; response was defined as faster walking times over shorter (6-9-month or longer (24-30-month treatment periods relative to subjects' best predose walking times.There were two to four times more T25FW responders among disabled MS subjects in the natalizumab arms than in the placebo or IM IFNβ-1a arms. Responders walked 25 feet an average of 24%-45% faster than nonresponders.Natalizumab improves ambulatory function in disabled RRMS subjects and may have efficacy in disabled SPMS subjects. Confirmation of the latter finding in a prospective SPMS study is warranted.
Soule, Eric K; Pomeranz, Jamie L; Moorhouse, Michael D; Barnett, Tracey E
People with disabilities (PWD) are at greatest risk for tobacco use compared to people without disabilities. However, little is known about the use of multiple types of tobacco by PWD. The purpose of this study was to examine nicotine dependence among a sample of PWD who use multiple types tobacco products. We hypothesized that individuals who used multiple forms of tobacco would have higher levels of nicotine dependence. A tobacco survey was administered to clients who use tobacco and receive services from an organization that provides independent living services to PWD. The self-report brief survey included measures of nicotine dependence and items indicating the types of tobacco products participants used. A total of 113 male and female participants with disabilities (mean age = 51.7, SD = 10.1) participated in the study. Multiple tobacco use was reported by 16.8% of the participants and was significantly associated with nicotine dependence. Compared to single tobacco product users, multiple tobacco users were more likely to use tobacco within the first 30 min of waking, believe tobacco the first thing in the morning would be the most difficult to give up, and find it hard to not use tobacco in prohibited locations. The use of multiple types of tobacco products among PWD disability is relatively common and is associated with greater nicotine dependence. Tobacco cessation interventions targeting PWD should consider the addressing unique challenges of preventing different types of tobacco products. Copyright © 2015 Elsevier Inc. All rights reserved.
Sadati, Ahmad Kalateh; Salehzade, Hamze; Hemmati, Soroor; Darvish, Manijeh; Heydari, Seyed Taghi; Tabrizi, Reza
Families with disabled children need more psycho-social considerations. Motherhood care of the children with multiple disabilities is difficult. Due to its importance, the aim of this study was to investigate the causal factors affecting loving care of mothers of children with multiple disabilities. The study used a cross-sectional method in which 75 mothers of exceptional children with multiple disabilities (physical and mental) in elementary schools in Shiraz, Iran. The data were collected through questionnaires which, besides demographical factors, evaluated the relationship between mothers' loving care of children with multiple disabilities and four other variables including purpose in life, life satisfaction, religious attitude, and sense of coherence. Mann-Whitney U was used for comparison between mothers' loving care and other variables. Results revealed that demographic variables did not have a significant relationship with loving care. In the case of social variables, there was a significant relationship between mothers' loving care and purpose in life (Pdisabled children is a unique phenomenon which is due to attachment of mother-child situation. Nevertheless, these mothers are vulnerable and marginalized people who need more attention and social supports provided by related governmental institutions and also NGOs actors.
Voelker, S; Shore, D; Hakim-Larson, J; Bruner, D
Parent and teacher ratings of adaptive skills of 59 children with multiple disabilities (mean age 6 years) in a rehabilitation day treatment setting were compared. The Vineland Adaptive Behavior Scales Classroom and Survey Editions were administered to each child's teacher and mother or other primary caretaker, respectively. Correlational analyses indicated a robust relation between Vineland forms; however, mean score comparisons indicated that teachers systematically rated the children as more skilled in both the global and the specific domains of adaptive behavior than did caretakers. Sources of interrater disagreement and implications for assessment of children with multiple disabilities were discussed.
Norén, Niklas; Pilesjö, Maja Sigurd
Asking a question can be a highly challenging task for a person with multiple disabilities, but questions have not received much attention in research on augmentative and alternative communication (AAC). Conversation analysis is employed to examine an instance of multiparty interaction where...... a speech and language therapist supports a child with multiple disabilities to ask a question with a communication board. The question is accomplished through a practice where the action is built as a trajectory of interactional steps. Each step is built using ways of involvement that establish different...
Sandroff, Brian M; Bollaert, Rachel E; Pilutti, Lara A; Peterson, Melissa L; Baynard, Tracy; Fernhall, Bo; McAuley, Edward; Motl, Robert W
Mobility disability is a common, debilitating feature of multiple sclerosis (MS). Exercise training has been identified as an approach to improve MS-related mobility disability. However, exercise randomized controlled trials (RCTs) on mobility in MS have generally not selectively targeted those with the onset of irreversible mobility disability. The current multi-site RCT compared the efficacy of 6-months of supervised, multimodal exercise training with an active control condition for improving mobility, gait, physical fitness, and cognitive outcomes in persons with substantial MS-related mobility disability. 83 participants with substantial MS-related mobility disability underwent initial mobility, gait, fitness, and cognitive processing speed assessments and were randomly assigned to 6-months of supervised multimodal (progressive aerobic, resistance, and balance) exercise training (intervention condition) or stretching-and-toning activities (control condition). Participants completed the same outcome assessments halfway through and immediately following the 6-month study period. There were statistically significant improvements in six-minute walk performance (F(2158)=3.12, p=0.05, ηp2=0.04), peak power output (F(2150)=8.16, pmobility disability. This is critical for informing the development of multi-site exercise rehabilitation programs in larger samples of persons with MS-related mobility disability. Copyright © 2017 Elsevier Inc. All rights reserved.
D'hooghe, M. B.; Nagels, G.; Bissay, V.; De Keyser, J.
A growing body of literature indicates that the natural course of multiple sclerosis can be influenced by a number of factors. Strong evidence suggests that relapses can be triggered by infections, the postpartum period and stressful life events. Vaccinations against influenza, hepatitis B and
Rocca, Maria A; Sormani, Maria Pia; Rovaris, Marco; Caputo, Domenico; Ghezzi, Angelo; Montanari, Enrico; Bertolotto, Antonio; Laroni, Alice; Bergamaschi, Roberto; Martinelli, Vittorio; Comi, Giancarlo; Filippi, Massimo
Prognostic markers of primary progressive multiple sclerosis evolution are needed. We investigated the added value of magnetic resonance imaging measures of brain and cervical cord damage in predicting long-term clinical worsening of primary progressive multiple sclerosis compared to simple clinical assessment. In 54 patients, conventional and diffusion tensor brain scans and cervical cord T1-weighted scans were acquired at baseline and after 15 months. Clinical evaluation was performed after 5 and 15 years in 49 patients. Lesion load, brain and cord atrophy, mean diffusivity and fractional anisotropy values from the brain normal-appearing white matter and grey matter were obtained. Using linear regression models, we screened the clinical and imaging variables as independent predictors of 15-year disability change (measured on the expanded disability status scale). At 15 years, 90% of the patients had disability progression. Integrating clinical and imaging variables at 15 months predicted disability changes at 15 years better than clinical factors at 5 years (R2 = 61% versus R2 = 57%). The model predicted long-term disability change with a precision within one point in 38 of 49 patients (77.6%). Integration of clinical and imaging measures allows identification of primary progressive multiple sclerosis patients at risk of long-term disease progression 4 years earlier than when using clinical assessment alone. © The Author (2017). Published by Oxford University Press on behalf of the Guarantors of Brain. All rights reserved. For Permissions, please email: email@example.com.
Rito, Yamel; Flores, Jesus; Fernández-Aguilar, Angeles; Escalante-Membrillo, Carmen; Barboza, Miguel A; Amezcua, Lilyana; Corona, Teresa
Previous studies of multiple sclerosis (MS) patients have reported an inverse correlation between disability, the number of relapses and vitamin D levels in mostly white patients. It is unclear if this relationship has the same behavior in individuals with Hispanic backgrounds. To determine the relationship between vitamin D serum levels and disability in a sample of Hispanics of a Mexican background with relapsing-remitting multiple sclerosis (RRMS). A cross-sectional study was conducted on 50 RRMS individuals of Mexican background. The Expanded Disability Status Scale (EDSS) score, progression index (PI) and annual relapse rate (ARR) were recorded for each patient. Vitamin D levels were assessed during the summer. Pearson's test was used to evaluate the relationship between vitamin D and EDSS, PI, ARR, and duration of disease evolution. Most patients were females (n = 29, 58%). The mean vitamin D level was 22.3 (± 6.4) ng/ml; the mean EDSS score was 2.2 (± 0.7), ARR 1.3 (± 0.5) and PI1.08 (± 0.6). No correlation was found between vitamin D levels and EDSS scores, ARR, PI or duration of disease. Moderate negative association between vitamin D levels and EDSS was found just in females (vitamin D levels and disability was found in this sample of RRMS Mexicans. Longitudinal studies are needed to better understand the impact of Vitamin D in disability and multiple time points.
Att Tolka Barns Signaler: Gravt utvecklingsstorda flerhandikappade barns lek och kommunikation (To Interpret Childrens' Signals: Play and Communication in Profoundly Mentally Retarded and Multiply Handicapped Children).
Written in Swedish with an English-language summary, this report describes a study which examined the interaction between mothers or caregivers and their children with profound mental retardation and multiple disabilities, particularly looking at the function of play in communicative interaction. The six children all had five or six handicaps in…
Verdugo, Miguel A; Gómez, Laura E; Arias, Benito; Navas, Patricia; Schalock, Robert L
Although there are numerous quality of life instruments in the, field of intellectual disability, most of them are addressed to those, people with the highest levels of functioning, while only a few are, suitable for people with the lowest levels (i.e., people with profound, and severe intellectual disabilities, or people with intellectual and, developmental disabilities and other significant medical conditions or, disabilities). This study provides reliability and validity evidence of, the San Martín Scale, a 95-item Likert scale questionnaire that is, completed by a third-party respondent. The validation sample was composed, of 1770 people from Spain with intellectual and developmental, disabilities that showed extensive or pervasive support needs (8.7% had, mild intellectual disability, 28.25% moderate, 41.6% severe, and 21.4%, profound). The age of the participants ranged between 16 and 77 years old, (M=7.78; SD=12.32). The results suggested that the eight quality of, life domains assessed on the scale are reliable (Cronbach's alpha ranging, from .821 to .933). Confirmatory Factor Analyses provided construct, validity evidences related to the internal structure of the San Martín, Scale, and indicated that the eight first-order factor solution provided, the best fit to the data over unidimensional and hierarchical solutions. Implications of these findings and guidelines for further research are, discussed. Copyright © 2013 Elsevier Ltd. All rights reserved.
Background: Children with multiple impairments have more complex developmental problems than children with a single impairment. Method: We compared children, aged 4 to 11 years, with intellectual disability (ID) and visual impairment to children with single ID, single visual impairment and typical development on "Child Behavior Check…
Lehrman, Jennifer; Ross, David B.
A 9-year-old with multiple disabilities and visual impairments was the focus of a 10-week developmental therapeutic riding program incorporating hippotherapy. The program has led to increased mobility, an increase in visual attention span and fixation time, signs of greater verbal communication, and the acquisition of new functional signs.…
Parsons, Marsha B.; Reid, Dennis H.; Green, Carolyn W.
A study evaluated the use of a situational assessment for identifying work task preferences among three individuals with multiple severe disabilities. The assessment involved systematically observing indices of happiness and unhappiness while participants worked on different tasks. Work engagement was most frequent when workers worked on their…
Nelson, Catherine; van Dijk, Jan; McDonnell, Andrea P.; Thompson, Kristina
This article describes a framework for assessing young children with severe multiple disabilities. The assessment is child-led and examines underlying processes of learning, including biobehavioral state, orienting response, learning channels, approach-withdrawal, memory, interactions, communication, and problem solving. Case studies and a sample…
Whinnery, Stacie B.; Whinnery, Keith W.
This study investigated the effects of a functional mobility program on the functional standing and walking skills of five adults with developmental disabilities. The Mobility Opportunities Via Education (MOVE) Curriculum was implemented using a multiple-baseline across subjects design. Repeated measures were taken during baseline, intervention…
Goksel Karatepe, Altlnay; Kaya, Taciser; Gunaydn, Rezzan; Demirhan, Aylin; Ce, Plnar; Gedizlioglu, Muhtesem
Aim: The aim of this study was to assess the quality of life (QoL) in patients with multiple sclerosis (MS), and to evaluate its association with disability and psychosocial factors especially depression and fatigue. Methods: Demographic characteristics, education level, disease severity, and disease duration were documented for each patient. QoL,…
Luiselli, James K.
Therapeutic intervention to treat chronic food refusal in two children with multiple developmental disabilities consisted of elimination of feeding "demands" that provoked child agitation, incorporation of sensory stimulation as contingent reinforcement, and gradual introduction of the requirements for oral consumption. Consistent oral…
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Campodonico, Francesca; Oliva, Doretta
This study was an effort to extend the evaluation of orientation technology for promoting independent indoor traveling in persons with multiple disabilities. Two participants (adults) were included, who were to travel to activity destinations within occupational settings. The orientation system involved (a) cueing sources only at the destinations…
Many children with severe or multiple disabilities, including those with visual impairment, are limited in their ability to communicate. "Communication" is defined as how a person exchanges information about his or her desires, needs, knowledge, and perceptions with another person. Communication can be verbal, written, or nonverbal, such…
Schreurs, K.M.G.; Ridder, D.T.D. de; Bensing, J.M.
Objective: To explore relations of fatigue, physical disabilities, and depression in patients with multiple sclerosis (MS) cross-sectionally and over time. Methods: Ninety-eight MS patients were interviewed twice at an interval of a year. Relationships of physical and mental fatigue, and reduced
Schoonheim, M.M.; Geurts, J.J.G.; Wiebenga, O.T.; de Munck, J.C.; Polman, C.H.; Stam, C.J.; Barkhof, F.; Wink, A.M.
Background: Cognitive dysfunction in multiple sclerosis (MS) has a large impact on the quality of life and is poorlyunderstood.Objective: The aim of this study was to investigate functional network integrity in MS, and relate this to cognitivedysfunction and physical disability.Methods: Resting
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Alberti, Gloria; Scigliuzzo, Francesca; Signorino, Mario; Oliva, Doretta; Smaldone, Angela; La Martire, Maria L.
These two studies assessed adapted orientation technology for promoting correct direction and room identification during indoor traveling by persons with multiple (e.g., sensory, motor and intellectual/adaptive) disabilities. In Study I, two adults were included who had severe visual impairment or total blindness and deafness and used a wheelchair…
Vitkova, Marianna; Gdovinova, Zuzana; Rosenberger, Jaroslav; Szilasiova, Jarmila; Mikula, Pavol; Stewart, Roy E; Groothoff, Johan W; van Dijk, Jitse P
Poor sleep is a serious burden for patients with multiple sclerosis (MS). The aim of this study is to assess whether the association between sleep quality and disability in MS patients is direct or mediated by depression, pain, and fatigue. We collected data from 152 patients with MS who filled out
Holmqvist, Eva; Derbring, Sandra; Wallin, Sofia
This paper presents work on developing methodology material for use of gaze controlled computers. The target group is families and professionals around children with severe multiple disabilities. The material includes software grids for children at various levels, aimed for communication, leisure and learning and will be available for download.
Banerjee, Rashida; Sundeen, Todd; Hutchinson, Susan R.; Jackson, Lewis
The Special Education Elementary Longitudinal Study data set was utilised to examine the potential influences on placement decisions for students with multiple disabilities in the US. The sample consisted of 415 students. Specifically, the study investigated whether factors including students' prior special education experiences, parental…
Poon, Kenneth K.
This study sought to understand the profile of and the factors which impact upon challenging behaviors among children with autism spectrum disorders (ASD) and multiple disabilities (MD). Teachers of 322 and 132 children with ASD and MD, respectively, attending special schools in Singapore, completed the Developmental Behavior Checklist, Teacher…
Clark, Christine; McDonnell, Andrea P.
This study examined the effectiveness of an intervention package that included visual accommodations, daily preference assessments, and naturalistic instructional strategies on the accuracy of choice-making responses for three participants with visual impairments and multiple disabilities. It also examined the participants' ability to maintain and…
Whinnery, Stacie B.; Whinnery, Keith W.
This article presents a case study of an adult with severe, multiple disabilities and discusses issues affecting meaningful life participation. Emphasis is placed on the role of functional mobility skills to increase active engagement in age-appropriate activities and opportunities to make informed choices. MOVE for Adults (Mobility Opportunities…
Koski, Katja; Launonen, Kaisa
Background: Speech and language therapists (SLTs) working with adults who have multiple learning disabilities and complex communication needs often deliver their care via indirect therapy where SLTs train carers to communicate with their clients. Yet, very little is known about how SLTs assess the carers' communication skills prior to the training…
Safak, Pinar; Yilmaz, Hatice Cansu; Demiryurek, Pinar; Dogus, Mustafa
The aim of the study was to investigate the effect of performance feedback (PF) provided to student teachers working with students with multiple disabilities and visual impairment (MDVI) on their teaching skills. The study group of the research was composed of 11 student teachers attending to the final year of the Teaching Students with Visual…
Pizzo, Lianna; Bruce, Susan M.
This article investigates the relationships between play and language development in students with multiple disabilities and visual impairments or deaf-blindness. The findings indicate that students with higher levels of communication demonstrate more advanced play skills and that the use of play-based assessment and exposure to symbolic play are…
D'hooghe, M. B.; Haentjens, P.; Nagels, G.; Garmyn, M.; De Keyser, J.
Background: Sunlight and vitamin D have been inversely associated with the risk of multiple sclerosis (MS). Objective: We investigated sunlight exposure and sun sensitivity in relation to disability progression in MS. Methods: We conducted a survey among persons with MS, registered by the Flemish MS
Poon, Kenneth K.; Koh, Lynette; Magiati, Iliana
Aims: This study examined parental perspectives on the importance and likelihood of future adult outcomes for children with Autism Spectrum Disorders (ASD), Intellectual Disabilities (ID), or Multiple Disabilities (MD) and some of the factors that may affect parental aspirations. Methods: Parents of 105 children with ASD, ID, or MD were presented…
Phillips, Lorraine J.
Multiple sclerosis and fibromyalgia syndrome may spur substantial disability for those affected. Using structural equation modeling, this secondary analysis examined predictors of disability in women with multiple sclerosis (n = 118) and fibromyalgia syndrome (n = 197) recruited for separate wellness studies. Greater functional limitations, lower…
Klenk, Jessicia A.; Pufpaff, Lisa A.
Research on literacy instruction for students with multiple disabilities is limited. Empirical research on braille instruction for students with multiple disabilities that include congenital blindness is virtually nonexistent. This case study offers initial insight into possible methods of early braille literacy instruction for a student with…
Gautam, Priyanka; Bhatia, M S; Rathi, Anubhav
Comorbid psychiatric Disorders are seen commonly in people with intellectual disability and in fact they are at greater risk for developing other health disorders. Most prevalent chronic health conditions in children with intellectual disability are epilepsy, cerebral palsy,anxiety disorders, sleep disorders and autism spectrum disorders. Co morbidities multiply the problem of people with intellectual impairment to a great extent and hence an accurate psychological assessment of multiple diagnoses is useful in detecting the specific underlying processes differentiating the co morbid syndrome and in planning an appropriate management and rehabilitation program. This case report is presented to emphasize the fact that though. It is common for intellectually disabled children to have other co-morbid psychiatric disorders, it is important to have accurate, suitable assessment and recording of every co-morbid disorder as it has its own implication in course and outcome of the disability in the child. A comprehensive management approach involving people from various spheres would be required to improve the quality of life and for reduction of burden of care giver.We describe a child of intellectual disability with multiple co morbidities.
Full Text Available In secondary progressive Multiple Sclerosis (SPMS, global neurodegeneration as a driver of disability gains importance in comparison to focal inflammatory processes. However, clinical MRI does not visualize changes of tissue composition outside MS lesions. This quantitative MRI (qMRI study investigated cortical and deep gray matter (GM proton density (PD values and T1 relaxation times to explore their potential to assess neuronal damage and its relationship to clinical disability in SPMS.11 SPMS patients underwent quantitative T1 and PD mapping. Parameter values across the cerebral cortex and deep GM structures were compared with 11 healthy controls, and correlation with disability was investigated for regions exhibiting significant group differences.PD was increased in the whole GM, cerebral cortex, thalamus, putamen and pallidum. PD correlated with disability in the whole GM, cerebral cortex, putamen and pallidum. T1 relaxation time was prolonged and correlated with disability in the whole GM and cerebral cortex.Our study suggests that the qMRI parameters GM PD (which likely indicates replacement of neural tissue with water and cortical T1 (which reflects cortical damage including and beyond increased water content are promising qMRI candidates for the assessment of disease status, and are related to disability in SPMS.
Manfredonia, Francesco; Ciccarelli, Olga; Khaleeli, Zhaleh; Tozer, Daniel J; Sastre-Garriga, Jaume; Miller, David H; Thompson, Alan J
To investigate whether patients with early primary progressive multiple sclerosis show changes in T1 relaxation time (T1-RT) in normal-appearing white matter (NAWM) and normal-appearing gray matter (NAGM) during 2 years and whether T1-RT at baseline predicts disability. Twenty-one patients and 12 control subjects were studied at baseline and after 2 years. Expanded Disability Status Scale (EDSS) and Multiple Sclerosis Functional Composite (MSFC) scores were assessed. T1 relaxation time histograms of NAWM and NAGM were obtained in all subjects, and mean, peak height, and peak location of the histograms were measured. Paired t tests were used to compare baseline and 2-year histogram values in patients and control subjects. To investigate whether T1-RT predicted clinical changes, multiple linear regression analysis was used. Patients showed increases in NAWM and NAGM T1-RT mean and peak location during follow-up, and significant decreases in NAWM and NAGM peak height. Baseline NAWM T1-RT mean values and peak height predicted disability at 2 years, as measured with the Multiple Sclerosis Functional Composite score. T1 relaxometry is a good marker of disease progression and has prognostic potential in primary progressive multiple sclerosis.
Cohen, J. L.; Pouwer, F; Pfennings, L E
The Disability and Impact Profile (DIP) is used for the measurement of quality of life in multiple sclerosis (MS) patients. Data from 211 persons with definite MS from Belgium, Denmark and the Netherlands were used to address three questions. To what extent do the impairment ratings...... to sensory-cognitive intactness and a psychological well-being factor. A two-factor solution provides a first factor identical to that of the three-factor solution and a second factor representing psychological well-being. The two factors correlate well with instruments measuring disability...
Gedik, Zumrut; Sorias, Oya; Idiman, Egemen
The main aim of this cross-sectional study was to analyse the degree to which coping may act as a mediator between disability and psychosocial loss in people with relapsing remitting multiple sclerosis. Participants ( N = 158) completed measures of psychosocial loss and ways of coping. Disability status was evaluated by attending neurologists. Coping partially mediated the relationship between disability and psychosocial loss. Disability leads to the experience of psychosocial loss but it is not the sole factor determining the formation of psychosocial loss. Coping is also associated with such losses in multiple sclerosis.
Manouchehrinia, Ali; Tench, Christopher R.; Maxted, Jonathan; Bibani, Rashid H.; Britton, John
Tobacco smoking has been linked to an increased risk of multiple sclerosis. However, to date, results from the few studies on the impact of smoking on the progression of disability are conflicting. The aim of this study was to investigate the effects of smoking on disability progression and disease severity in a cohort of patients with clinically definite multiple sclerosis. We analysed data from 895 patients (270 male, 625 female), mean age 49 years with mean disease duration 17 years. Forty-nine per cent of the patients were regular smokers at the time of disease onset or at diagnosis (ever-smokers). Average disease severity as measured by multiple sclerosis severity score was greater in ever-smokers, by 0.68 (95% confidence interval: 0.36–1.01). The risk of reaching Expanded Disability Status Scale score milestones of 4 and 6 in ever-smokers compared to never-smokers was 1.34 (95% confidence interval: 1.12–1.60) and 1.25 (95% confidence interval: 1.02–1.51) respectively. Current smokers showed 1.64 (95% confidence interval: 1.33–2.02) and 1.49 (95% confidence interval: 1.18–1.86) times higher risk of reaching Expanded Disability Status Scale scores 4 and 6 compared with non-smokers. Ex-smokers who stopped smoking either before or after the onset of the disease had a significantly lower risk of reaching Expanded Disability Status Scale scores 4 (hazard ratio: 0.65, confidence interval: 0.50–0.83) and 6 (hazard ratio: 0.69, confidence interval: 0.53–0.90) than current smokers, and there was no significant difference between ex-smokers and non-smokers in terms of time to Expanded Disability Status Scale scores 4 or 6. Our data suggest that regular smoking is associated with more severe disease and faster disability progression. In addition, smoking cessation, whether before or after onset of the disease, is associated with a slower progression of disability. PMID:23757766
Shiee, Navid; Bazin, Pierre-Louis; Zackowski, Kathleen M.; Farrell, Sheena K.; Harrison, Daniel M.; Newsome, Scott D.; Ratchford, John N.; Caffo, Brian S.; Calabresi, Peter A.; Pham, Dzung L.; Reich, Daniel S.
Background Brain atrophy is a well-accepted imaging biomarker of multiple sclerosis (MS) that partially correlates with both physical disability and cognitive impairment. Methodology/Principal Findings Based on MRI scans of 60 MS cases and 37 healthy volunteers, we measured the volumes of white matter (WM) lesions, cortical gray matter (GM), cerebral WM, caudate nucleus, putamen, thalamus, ventricles, and brainstem using a validated and completely automated segmentation method. We correlated these volumes with the Expanded Disability Status Scale (EDSS), MS Severity Scale (MSSS), MS Functional Composite (MSFC), and quantitative measures of ankle strength and toe sensation. Normalized volumes of both cortical and subcortical GM structures were abnormally low in the MS group, whereas no abnormality was found in the volume of the cerebral WM. High physical disability was associated with low cerebral WM, thalamus, and brainstem volumes (partial correlation coefficients ∼0.3–0.4) but not with low cortical GM volume. Thalamus volumes were inversely correlated with lesion load (r = −0.36, p<0.005). Conclusion The GM is atrophic in MS. Although lower WM volume is associated with greater disability, as might be expected, WM volume was on average in the normal range. This paradoxical result might be explained by the presence of coexisting pathological processes, such as tissue damage and repair, that cause both atrophy and hypertrophy and that underlie the observed disability. PMID:22615886
Full Text Available Brain atrophy is a well-accepted imaging biomarker of multiple sclerosis (MS that partially correlates with both physical disability and cognitive impairment.Based on MRI scans of 60 MS cases and 37 healthy volunteers, we measured the volumes of white matter (WM lesions, cortical gray matter (GM, cerebral WM, caudate nucleus, putamen, thalamus, ventricles, and brainstem using a validated and completely automated segmentation method. We correlated these volumes with the Expanded Disability Status Scale (EDSS, MS Severity Scale (MSSS, MS Functional Composite (MSFC, and quantitative measures of ankle strength and toe sensation. Normalized volumes of both cortical and subcortical GM structures were abnormally low in the MS group, whereas no abnormality was found in the volume of the cerebral WM. High physical disability was associated with low cerebral WM, thalamus, and brainstem volumes (partial correlation coefficients ~0.3-0.4 but not with low cortical GM volume. Thalamus volumes were inversely correlated with lesion load (r = -0.36, p<0.005.The GM is atrophic in MS. Although lower WM volume is associated with greater disability, as might be expected, WM volume was on average in the normal range. This paradoxical result might be explained by the presence of coexisting pathological processes, such as tissue damage and repair, that cause both atrophy and hypertrophy and that underlie the observed disability.
Ensari, I; Pilutti, L A; Motl, R W
This study aimed to investigate whether neurological disability status, heart rate variability (HRV), cardiorespiratory fitness (CRF) explained the variance in depressive symptoms in multiple sclerosis (MS). Associations between CRF (via maximal oxygen uptake; VO 2peak ), HRV indices of normalized ultra-low (nULF) and very low frequency domains (nVLF), neurological disability status and depressive symptoms (using the Depression subscale of the Hospital Anxiety Depression Scale; HADS-D) were assessed in 53 participants with MS and 17 matched controls. Hierarchical linear regression analysis was conducted within the MS subsample to examine the variance explained by neurological disability alone and CRF. The groups were similar in mean age (MS=52.0 years, Control=51.1 years) and sex (MS=72% female, Control=77% female). Among individuals with MS, HADS-D scores significantly correlated with disability status (sample mean score=4) and VO 2peak (r=-.62, Plinear regression indicated that VO 2peak (P.05). Heart rate variability does not seem to significantly differ between individuals with MS and healthy controls. When accounting for CRF, disability status no longer explains significant variance in depressive symptoms in MS. Accordingly, targeting CRF might be an effective approach for effectively managing depressive symptoms in individuals with MS. © 2017 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
Full Text Available Background: Inclusion of children with intellectual disabilities (ID and multiple disabilities (MD in regular schools in India is extremely poor. One of the key objectives of community-based rehabilitation (CBR is to include ID & MD children in regular schools. This study attempted to find out association with age, ID severity, poverty, gender, parent education, population, and multiple disabilities comprising one or more disorders cerebral palsy, epilepsy and psychiatric disorders with inclusion among 259 children in Barwani Block of Barwani District in the state of Madhya Pradesh, India.Aim: Inclusion of children with intellectual and multiple disabilities in regular schools through CBR approach in India.Method: Chi square test was conducted to investigate association between inclusion and predictor variables ID categories, age, gender, poverty level, parent education, population type and multiple disabilities. Result: Inclusion was possible for borderline 2(66.4%, mild 54(68.3%, moderate 18(18.2%, and age range from 5 to 12 years 63 (43%. Children living in poor families 63 (30.6%, not poor 11(18.9%, parental education none 52 (26%, primary level 11 (65%, middle school 10 (48% high school 0 (0% and bachelor degree 1(7%, female 34 (27.9%, male 40 (29.2%, tribal 40 (28.7%, non-tribal 34(28.3% and multiple disabled with cerebral palsy 1(1.2%, epilepsy 3 (4.8% and psychiatry disorders 12 (22.6% were able to receive inclusive education. Significant difference in inclusion among ID categories (c2=99.8, p < 0.001, poverty (c2=3.37, p 0.044, parental education (c2=23.7, p < 0.001, MD CP (c2=43.9, p < 0.001 and epilepsy (c2=22.4, p < 0.001 were seen.Conclusion: Inclusion through CBR is feasible and acceptable in poor rural settings in India. CBR can facilitate inclusion of children with borderline, mild and moderate categories by involving their parents, teachers and community members.
Wang, ZeFeng; Peyrodie, Laurent; Cao, Hua; Agnani, Olivier; Watelain, Eric; Wang, HaoPing
Walk training research with children having multiple disabilities is presented. Orthosis aid in walking for children with multiple disabilities such as Cerebral Palsy continues to be a clinical and technological challenge. In order to reduce pain and improve treatment strategies, an intermediate structure - humanoid robot NAO - is proposed as an assay platform to study walking training models, to be transferred to future special exoskeletons for children. A suitable and stable walking model is proposed for walk training. It would be simulated and tested on NAO. This comparative study of zero moment point (ZMP) supports polygons and energy consumption validates the model as more stable than the conventional NAO. Accordingly direction variation of the center of mass and the slopes of linear regression knee/ankle angles, the Slow Walk model faithfully emulates the gait pattern of children.
Moberg, Julie Yoon; Laursen, Bjarne; Koch-Henriksen, N.
BACKGROUND: Little is known about the consequences of parental multiple sclerosis (MS) on offspring's socioeconomic circumstances. OBJECTIVE: To investigate employment, disability pension and income in offspring of parents with MS compared with matched reference persons in a nationwide register......-based cohort study. METHODS: All Danish-born persons with onset of MS during 1950-1986 were retrieved from the Danish Multiple Sclerosis Registry. Their offspring were identified using the Civil Registration System. One random offspring from each sibship was matched by sex and year of birth with eight random...... reference persons. RESULTS: We included 2456 MS offspring and 19,648 reference persons. At age 30, employment was lower among MS offspring than reference children (odds ratio (OR): 0.89; 95% confidence interval (CI): 0.84-0.95; p = 0.0003), and they more often received disability pension (OR: 1.31; 95% CI...
Ravnborg, M; Blinkenberg, M; Sellebjerg, F
The Multiple Sclerosis Impairment Scale (MSIS) is a measure of accumulated deficits assessed by means of a standard neurological examination. We compared the responsiveness of the MSIS with that of the Expanded Disability Status Scale (EDSS). We reviewed 4300 records collected systematically from......, while the variance of the annualized change in MSIS was stable. The study indicates that the responsiveness of the MSIS is better than that of the EDSS in terms of both magnitude and stability over the range of measurement...
ten Brug, Annet; van der Putten, Annette; Penne, Anneleen; Maes, Bea; Vlaskamp, Carla
Background Multi-sensory storytelling (MSST) books are individualized stories, which involve sensory stimulation in addition to verbal text. Despite the frequent use of MSST in practice, little research is conducted into its structure, content and effectiveness. This study aims at the analysis of
Sadeghi Bahmani, Dena; Calabrese, Pasquale; Merkt, Helene; Naegelin, Yvonne; Gerber, Markus; Pühse, Uwe; Holsboer-Trachsler, Edith; Brand, Serge
This study investigated the interrelatedness of physical disability, physical activity, and depression among patients with multiple sclerosis (MS). We hypothesized that self-reported physical activity would mediate the effect of disability on depressive symptoms. Twenty-seven patients with MS (mean age: 49 years; 44.5% females) completed self-rating scales covering sociodemographic variables, intake of antidepressants, physical activity, and symptoms of depression; disability was measured by the Expanded Disability Status Scale. We found a higher level of disability to be significantly associated with more symptoms of depression. While higher reported physical activity was descriptively associated with lower depression scores and unrelated to Expanded Disability Status Scale, physical activity levels did not mediate the effect of disability on depressive symptoms.
Ravnborg, M; Blinkenberg, M; Sellebjerg, F
The Multiple Sclerosis Impairment Scale (MSIS) is a measure of accumulated deficits assessed by means of a standard neurological examination. We compared the responsiveness of the MSIS with that of the Expanded Disability Status Scale (EDSS). We reviewed 4300 records collected systematically from...... 1995 to 2003 and identified 534 patients who had clinically definite multiple sclerosis and had had at least two clinical assessments with a time interval of 2-5 years. The rate of deterioration was significantly higher on the MSIS than on the EDSS. The annualized change in EDSS exhibited a maximum...
Amezcua, Lilyana; Conti, David V; Liu, Lihua; Ledezma, Karina; Langer-Goulda, Annette M
Hispanics in the US are a diverse community where their knowledge and risk for developing disability in multiple sclerosis (MS) may relate to their level of acculturation. To compare the risk of disability in Hispanics with MS in the US by place of birth and age of immigration. We conducted a cross-sectional study of 304 Hispanics with MS residing in Southern California. Place of birth and age of immigration were used as proxies to acculturation. Individuals were classified as US-born, early and late-immigrant (immigration to the US, respectively). Risk of disability (expanded disability status scale ≥6) was adjusted for age at symptom onset, sex, socioeconomic status, and disease duration, using logistic regression. Late-immigrants were older at symptom onset (34.2±11.9 vs. 31.9±12.9 vs. 28.5±9.7 years, pimmigrant and US-born respectively. There was no difference between groups by female sex, type of MS, ethnicity, chronic medical conditions, and disease duration while differences were noted by socioeconomic status. Being late-immigrant was independently associated with increased disability (adjusted OR 2.3 95% CIs 1.07–4.82; p=0.03) compared to US-born. Later immigration to the US in Hispanics with MS is associated with greater disability. These findings may reflect differences in social, environmental and cultural factors that may act as barriers for accessibility and utilization of health services. An in-depth assessment of the perceptions and attitudes about MS are warranted in this population.
Paz-Ballesteros, Wayra Citlali; Monterrubio-Flores, Eric Alejandro; de Jesús Flores-Rivera, José; Corona-Vázquez, Teresa; Hernández-Girón, Carlos
The rate at which disability progresses in multiple sclerosis (MS), and its severity, have been associated with modifiable lifestyle habits. To investigate the risk of disability progression in MS patients according to tobacco and alcohol consumption and to the presence of overweight. This was a follow-up of MS cases from a concluded case-control study (National Institute of Neurology and Neurosurgery, Mexico 2010-2013). The evolution in EDSS (Expanded Disability Scale Score) units was followed through a medical record review. Kaplan Meier statistics and multivariate Cox regression analysis were performed. Of 181 cases, 63.5% were women and 82.5% had relapsing remitting MS. Study duration was 19.95 ± 15.24 months. The disease progressed faster in daily smokers than in non-smokers (p = 0.0168). In overweight patients, disability progressed faster than in normal weight patients (p = 0.0249). Ex-consumers of alcohol had lower risk of progression than current consumers (HR = 0.33 CI 95% = 0.14-0.83, p = 0.019) and both daily and ex-smokers presented higher risk of progression than non-smokers (HR = 2.32 CI 95% = 1.14-4.72, p = 0.020 and HR = 3.56, CI 95% = 1.21-10.46, p = 0.021). Stratifying by gender, the effects of smoking and overweight were only found in men. Smoking is associated with rapid disability progression in MS. Our results suggest that cessation of tobacco and alcohol consumption could be clinically beneficial. Although there is association between overweight and disability progression in men, a further exploration of gender differences is necessary to corroborate this finding. Copyright © 2017 IMSS. Published by Elsevier Inc. All rights reserved.
Full Text Available Introduction: Multiple sclerosis (MS is one of the most common diseases of the central nervous system. In the world 2.1 million people suffer from MS. Usually MS is diagnosed between the ages of 20 and 50 years old and may be the cause of disability. Sexual problems are very common in male patients with MS although they are less frequent than they used to be. Aim of the research study: To describe the level of disability and sexual life in males with MS. Material and methods: The study was carried out on a total of 72 MS patients. MS subtypes included 30.55% (n = 22 secondary progressive; 27.77% (n = 20 relapsing-remitting; 22.22% (n = 16 primary progressive; and 16.66% (n = 12 progressive relapsing. The research tools consisted of our own questionnaires. Neurological disability was assessed by the Regional Committee for Adjudication of Disability and by the Expanded Disability Status Scale. Results: 8.33% (n = 6 of patients reported sexual activity every day, most reported either several times a week 25% (n = 18, several times a month 33.33% (n = 24, once a month 16.66% (n = 12, a few times a year 5.55% (n = 4 or once a year 11.11% (n = 8. Our findings conclude that neurological disability, low sexual activity and frequent use of sildenafil citrate or similar were common in the patients tested. Conclusions: These problems are permanently overlooked by medical professionals. In this aspect, cooperation between neurologists and sexologists could be important. Further research is needed for better understanding of the sexuality of this particular population.
Full Text Available Abstract Background The breakdown of the blood-brain-barrier vascular endothelium is critical for entry of immune cells into the MS brain. Vascular co-morbidities are associated with increased risk of progression. Dyslipidemia, elevated LDL and reduced HDL may increase progression by activating inflammatory processes at the vascular endothelium. Objective To assess the associations of serum lipid profile variables (triglycerides, high and low density lipoproteins (HDL, LDL and total cholesterol with disability and MRI measures in multiple sclerosis (MS. Methods This study included 492 MS patients (age: 47.1 ± 10.8 years; disease duration: 12.8 ± 10.1 years with baseline and follow-up Expanded Disability Status Score (EDSS assessments after a mean period of 2.2 ± 1.0 years. The associations of baseline lipid profile variables with disability changes were assessed. Quantitative MRI findings at baseline were available for 210 patients. Results EDSS worsening was associated with higher baseline LDL (p = 0.006 and total cholesterol (p = 0.001, 0.008 levels, with trends for higher triglyceride (p = 0.025; HDL was not associated. A similar pattern was found for MSSS worsening. Higher HDL levels (p p = 0.033. Conclusions Serum lipid profile has modest effects on disease progression in MS. Worsening disability is associated with higher levels of LDL, total cholesterol and triglycerides. Higher HDL is associated with lower levels of acute inflammatory activity.
Steverson, Tom; Adlam, Anna-Lynne R; Langdon, Peter E
The aims of the current study were to adapt a version of the MET for people with intellectual disabilities and assess its ecological and construct validity. Using a correlational design, 40 participants with intellectual disabilities were invited to complete a battery of neuropsychological assessments and the modified Multiple Errands Test for Intellectual Disabilities (mMET-IDs). The ability to successfully complete tasks on the mMET-IDs correlated significantly with measures of the Supervisory Attentional System, namely, the Tower of London Test and the Six Parts Test. However, performance on the mMET-IDs and the Six Parts Test could be accounted for by Verbal IQ and receptive vocabulary. The mMET-IDs failed to correlate with the DEX-IR. The mMET-IDs can be successfully used to assess some aspects of the Supervisory Attentional System in people with intellectual disabilities. Further development is needed, however, to improve the ecological validity of the mMET-IDs. © 2016 John Wiley & Sons Ltd.
Full Text Available Abstract Background What currently appears to be irreversible axonal loss in normal appearing white matter, measured by proton magnetic resonance spectroscopy is of great interest in the study of Multiple Sclerosis. Our aim is to determine the axonal damage in normal appearing white matter measured by magnetic resonance spectroscopy and to correlate this with the functional disability measured by Multiple Sclerosis Functional Composite scale, Neurological Rating Scale, Ambulation Index scale, and Expanded Disability Scale Score. Methods Thirty one patients (9 male and 22 female with relapsing remitting Multiple Sclerosis and a Kurtzke Expanded Disability Scale Score of 0–5.5 were recruited from four hospitals in Andalusia, Spain and included in the study. Magnetic resonance spectroscopy scans and neurological disability assessments were performed the same day. Results A statistically significant correlation was found (r = -0.38 p Conclusions There is correlation between disability (measured by Expanded Disability Scale Score and the NAA/Cr ratio in normal appearing white matter. The lack of correlation between the NAA/Cr ratio and the Multiple Sclerosis Functional Composite score indicates that the Multiple Sclerosis Functional Composite is not able to measure irreversible disability and would be more useful as a marker in stages where axonal damage is not a predominant factor.
Ann Marie Weideman
Full Text Available The search for the genetic foundation of multiple sclerosis (MS severity remains elusive. It is, in fact, controversial whether MS severity is a stable feature that predicts future disability progression. If MS severity is not stable, it is unlikely that genotype decisively determines disability progression. An alternative explanation tested here is that the apparent instability of MS severity is caused by inaccuracies of its current measurement. We applied statistical learning techniques to a 902 patient-years longitudinal cohort of MS patients, divided into training (n = 133 and validation (n = 68 sub-cohorts, to test four hypotheses: (1 there is intra-individual stability in the rate of accumulation of MS-related disability, which is also influenced by extrinsic factors. (2 Previous results from observational studies are negatively affected by the insensitive nature of the Expanded Disability Status Scale (EDSS. The EDSS-based MS Severity Score (MSSS is further disadvantaged by the inability to reliably measure MS onset and, consequently, disease duration (DD. (3 Replacing EDSS with a sensitive scale, i.e., Combinatorial Weight-Adjusted Disability Score (CombiWISE, and substituting age for DD will significantly improve predictions of future accumulation of disability. (4 Adjusting measured disability for the efficacy of administered therapies and other relevant external features will further strengthen predictions of future MS course. The result is a MS disease severity scale (MS-DSS derived by conceptual advancements of MSSS and a statistical learning method called gradient boosting machines (GBM. MS-DSS greatly outperforms MSSS and the recently developed Age Related MS Severity Score in predicting future disability progression. In an independent validation cohort, MS-DSS measured at the first clinic visit correlated significantly with subsequent therapy-adjusted progression slopes (r = 0.5448, p = 1.56e−06 measured by
Moberg, Julie Yoon; Laursen, Bjarne; Koch-Henriksen, Nils; Thygesen, Lau Caspar; Brødsgaard, Anne; Soelberg Sørensen, Per; Magyari, Melinda
Little is known about the consequences of parental multiple sclerosis (MS) on offspring's socioeconomic circumstances. To investigate employment, disability pension and income in offspring of parents with MS compared with matched reference persons in a nationwide register-based cohort study. All Danish-born persons with onset of MS during 1950-1986 were retrieved from the Danish Multiple Sclerosis Registry. Their offspring were identified using the Civil Registration System. One random offspring from each sibship was matched by sex and year of birth with eight random reference persons. We included 2456 MS offspring and 19,648 reference persons. At age 30, employment was lower among MS offspring than reference children (odds ratio (OR): 0.89; 95% confidence interval (CI): 0.84-0.95; p = 0.0003), and they more often received disability pension (OR: 1.31; 95% CI: 1.15-1.50; p < 0.0001) at ages 30 and 40 but not at age 50. Although the mean income was not significantly lower for the MS offspring cohort, most of them attained an annual personal income below 250,000 DKK (Danish krone), that is, ~33,650 EUR (OR: 0.91; 95% CI: 0.84-0.99; p = 0.04). Having had a parent with MS may affect employment and increase the risk of disability pension and low income in adult life.
Hatamian, Hamidreza; Bidabadi, Elham; Saadat, Seyed Mohammad Seyed; Saadat, Niloufar Seyed; Kazemnezhad, Ehsan; Ramezani, Hamed
Background Although the precise etiology of multiple sclerosis (MS) is unknown, it seems that both genetic and environmental factors are important. Recent studies suggest that low serum vitamin D levels are important environmental factor in MS. The aim of this study was to compare the serum levels of vitamin D between MS patients and healthy subjects, and to determine its association with disability in MS patients. Methods In this cross-sectional study, a total of 52 patients with MS were randomly recruited and matched for age and sex with 52 healthy subjects. Demographic characteristics and serum vitamin D levels for both groups, as well as duration of disease Expanded Disability Status Scale (EDSS) for MS patients were evaluated. Statistical analysis was performed by independent samples t-test and multiple linear regression analysis. Results The mean serum vitamin D levels were 26.5 ± 16.3 ng/ml in MS patients vs. 37.1 ±19.7 in healthy subjects (P = 0.003). A linear regression analysis showed no significant association between vitamin D levels and EDSS score of patients with MS (P = 0.345), after adjusting for the covariates. Conclusion Our findings did not suggest a protective association for serum vitamin D levels against disability in MS patients. PMID:24250900
Buelow, J M
Twenty multiple sclerosis (MS) patients admitted to the hospital for treatment of exacerbation of their disease were asked to identify stressors and the coping mechanisms they employed to deal with stressors. They completed the MS Stressor Scale (a twenty item Likert-type scale) and the Jalowiec Coping Scale (sixty-item Likert-type scale). Disability level was measured using the Barthel Index. Results showed an overall mean stress score of 1.49 on a scale of 1 to 3. The most stressful items identified were feeling tired, inability to walk and uncertainty about the future. The most prevalent coping theme used was self-reliance and the most prevalent individual coping responses were a sense of humor and trying to learn more. A positive correlation was found between uncertainty about the future and fatalistic coping, and a negative correlation between depression and optimistic coping. No relationship was found between degree of disability and stressors.
Full Text Available The risk of developing multiple sclerosis (MS as well as MS disease activity is associated with vitamin D (25(OHD status. The relationship between the main functional disability hallmark of MS, disability progression, and 25(OHD status is less well established though, especially not in MS patients with progressive disease.This retrospective follow-up study included 554 MS patients with a serum baseline 25(OHD level and Expanded Disability Status Scale (EDSS with a minimum follow-up of three years. Logistic regressions were performed to assess the effect of baseline 25(OHD status on relapse rate. Repeated measures linear regression analyses were performed to assess the effect on disability and disability progression.Baseline deseasonalized 25(OHD status was associated with subsequent relapse risk (yes/no, but only in the younger MS patients (≤ 37.5 years; OR = 0.872, per 10 nmol/L 25(OHD, p = 0.041. Baseline 25(OHD status was not significantly associated with either disability or disability progression, irrespective of MS phenotype.Within the physiological range, 25(OHD status is just significantly associated with the occurrence of relapses in younger MS patients, but is not associated with disability or disability progression over three years follow-up. Whether high dose supplementation to supra physiological 25(OHD levels prevents disability progression in MS should become clear from long term follow-up of supplementation studies.
Martínez, Rebecca S; Semrud-Clikeman, Margaret
Early adolescents (Grades 6-8) with multiple learning disabilities (LD; reading and math) in inclusive settings were compared to adolescents with single LD (reading or math) and typically achieving (TA) peers regarding their psychosocial functioning in two areas of adolescent well-being: emotional adjustment and school functioning. The Behavior Assessment System for Children (Reynolds & Kamphaus, 1998) Self-Report of Personality for adolescents was used to determine well-being. One hundred twenty middle school students-15 boys and 15 girls in each group-were included in the current study. The results confirmed that adolescents with multiple LD (reading and math) reported poorer functioning (i.e., higher T scores) on school maladjustment, clinical maladjustment, emotional symptoms index, attitude to school, atypicality, and depression when compared to TA peers but not when compared to peers with a single LD (reading or math). All three groups differed from the TA group (but not from each other) on sense of inadequacy, with the multiple LD group reporting the highest T scores. Additional analyses indicated significant differences between girls and boys, regardless of disability status. Girls reported higher T scores on the emotional symptoms index, social stress, and depression, but boys reported greater school maladjustment and sensation seeking. Implications for practice and recommendations for future research are discussed.
Seliner, Brigitte; Latal, Bea; Spirig, Rebecca
The hospitalisation of a multiple disabled child is stressful for parents because they continue to carry out demanding care procedures in hospital. Yet, systematic knowledge of the parental experience and of their support needs is missing. How do parents experience the hospitalisation, and which support needs do they identify for this period? Methods: Twenty-six parents (24 mothers, 2 fathers) of 24 children with multiple disabilities have participated in this qualitative study. Between 1 January 2011 and 1 September 2013, semi-structured interviews were conducted in a children's university hospital. A qualitative content analysis formed the basis for the analysis. “Concerns for the child's well-being” was central for the parents and focussed on the areas of “Pain”, “Complications” and “Development”. Perception of the child's well-being governs the extent of the “Parents' Work” and defines the parental “Support needs” to “Receive information and training”, “Be known and experience continuity”, “Be taken seriously and experience communion”, “Be accompanied by experienced nurses”, and “Be relieved and get organisational support”. Parents work hard to safeguard the well-being of their hospitalised child with multiple handicaps. Care professionals can ease the parents' burden by promoting parental confidence in their child's welfare in hospital. This will be successful if continuity of care and competence are ensured, for instance if it is provided by nurses with Advanced Practice background.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Perilli, Viviana; Oliva, Doretta; Buono, Serafino
Three microswitch-aided programs were assessed in three single-case studies to enhance physical exercise or ambulation in participants with multiple disabilities. Study I was aimed at helping a woman who tended to have the head bending forward and the arms down to exercise a combination of appropriate head and arms movements. Study II was aimed at promoting ambulation continuity with a man who tended to have ambulation breaks. Study III was aimed at promoting ambulation with appropriate foot position in a girl who usually showed toe walking. The experimental designs of the studies consisted of a multiple probe across responses (Study I), an ABAB sequence (Study II), and an ABABB(1) sequence (Study III). The last phase of each study was followed by a post-intervention check. The microswitches monitored the target responses selected for the participants and triggered a computer system to provide preferred stimuli contingent on those responses during the intervention phases of the studies. Data showed that the programs were effective with each of the participants who learned to exercise head and arms movements, increased ambulation continuity, and acquired high levels of appropriate foot position during ambulation, respectively. The positive performance levels were retained during the post-intervention checks. The discussion focused on (a) the potential of technology-aided programs for persons with multiple disabilities and (b) the need of replication studies to extend the evidence available in the area. Copyright © 2014 Elsevier Ltd. All rights reserved.
Studer, Valeria; Rocchi, Camilla; Motta, Caterina; Lauretti, Benedetta; Perugini, Jacopo; Brambilla, Laura; Pareja-Gutierrez, Lorena; Camera, Giorgia; Barbieri, Francesca Romana; Marfia, Girolama A; Centonze, Diego; Rossi, Silvia
Sympathovagal imbalance has been associated with poor prognosis in chronic diseases, but there is conflicting evidence in multiple sclerosis. The objective of this study was to investigate the autonomic nervous system dysfunction correlation with inflammation and progression in multiple sclerosis. Heart rate variability was analysed in 120 multiple sclerosis patients and 60 healthy controls during supine rest and head-up tilt test; the normalised units of low frequency and high frequency power were considered to assess sympathetic and vagal components, respectively. Correlation analyses with clinical and radiological markers of disease activity and progression were performed. Sympathetic dysfunction was closely related to the progression of disability in multiple sclerosis: progressive patients showed altered heart rate variability with respect to healthy controls and relapsing-remitting patients, with higher rest low frequency power and lacking the expected low frequency power increase during the head-up tilt test. In relapsing-remitting patients, disease activity, even subclinical, was associated with lower rest low frequency power, whereas stable relapsing-remitting patients did not differ from healthy controls. Less sympathetic reactivity and higher low frequency power at rest were associated with incomplete recovery from relapse. Autonomic balance appears to be intimately linked with both the inflammatory activity of multiple sclerosis, which is featured by an overall hypoactivity of the sympathetic nervous system, and its compensatory plastic processes, which appear inefficient in case of worsening and progressive multiple sclerosis.
Cannella-Malone, Helen I; Sabielny, Linsey M; Tullis, Christopher A
The purpose of this study was to replicate Fleming et al. (2010) by examining the use of eye gaze in identifying reinforcers for 3 individuals with severe multiple disabilities. Preference was measured in a paired-choice stimulus preference assessment using duration of eye gaze to determine stimulus selection. A subsequent reinforcer assessment used a reversal design to test the reinforcing effects of the high- and low-preference stimuli. The results replicated Fleming et al., indicating that using eye gaze as a selection method successfully identified reinforcing stimuli. © Society for the Experimental Analysis of Behavior.
Jasse, Laurence; Vukusic, Sandra; Durand-Dubief, Françoise; Vartin, Cristina; Piras, Carolina; Bernard, Martine; Pélisson, Denis; Confavreux, Christian; Vighetto, Alain; Tilikete, Caroline
The objective of this article is to evaluate in multiple sclerosis (MS) patients the prevalence of persistent complaints of visual disturbances and the mechanisms and resulting functional disability of persistent visual complaints (PVCs). Firstly, the prevalence of PVCs was calculated in 303 MS patients. MS-related data of patients with or without PVCs were compared. Secondly, 70 patients with PVCs performed an extensive neuro-ophthalmologic assessment and a vision-related quality of life questionnaire, the National Eye Institute Visual Functionary Questionnaire (NEI-VFQ-25). PVCs were reported in 105 MS patients (34.6%). Patients with PVCs had more frequently primary progressive MS (30.5% vs 13.6%) and more neuro-ophthalmologic relapses (1.97 vs 1.36) than patients without PVCs. In the mechanisms/disability study, an afferent visual and an ocular-motor pathways dysfunction were respectively diagnosed in 41 and 59 patients, mostly related to bilateral optic neuropathy and bilateral internuclear ophthalmoplegia. The NEI-VFQ 25 score was poor and significantly correlated with the number of impaired neuro-ophthalmologic tests. Our study emphasizes the high prevalence of PVC in MS patients. Regarding the nature of neuro-ophthalmologic deficit, our results suggest that persistent optic neuropathy, as part of the progressive evolution of the disease, is not rare. We also demonstrate that isolated ocular motor dysfunctions induce visual disability in daily life.
Schlaeger, Regina; Schindler, Christian; Grize, Leticia; Dellas, Sophie; Radue, Ernst W; Kappos, Ludwig; Fuhr, Peter
The development of predictors of multiple sclerosis (MS) disability is difficult due to the complex interplay of pathophysiological and adaptive processes. The purpose of this study was to investigate whether combined evoked potential (EP)-measures allow prediction of MS disability after 20 years. We examined 28 patients with clinically definite MS according to Poser's criteria with Expanded Disability Status Scale (EDSS) scores, combined visual and motor EPs at entry (T0), 6 (T1), 12 (T2) and 24 (T3) months, and a cranial magnetic resonance imaging (MRI) scan at T0 and T2. EDSS testing was repeated at year 14 (T4) and year 20 (T5). Spearman rank correlation was used. We performed a multivariable regression analysis to examine predictive relationships of the sum of z-transformed EP latencies (s-EPT0) and other baseline variables with EDSST5. We found that s-EPT0 correlated with EDSST5 (rho=0.72, pdisability in MS. © The Author(s) 2014.
D'hooghe, M B; Haentjens, P; Van Remoortel, A; De Keyser, J; Nagels, G
The purpose of our study is to investigate whether socioeconomic indicators such as education, financial concerns, employment, and living status are associated with disease progression in relapsing-onset and progressive-onset Multiple Sclerosis (MS). We performed a cross-sectional survey among individuals with MS, registered by the Flemish MS society and included socioeconomic indicators. A Cox proportional hazard regression was performed with the time from MS onset and from birth to reach an ambulatory disability milestone corresponding to Expanded Disability Status Scale (EDSS) 6 (requiring a cane) as outcome measure, adjusted for gender, age at MS onset, and immunomodulatory treatment. Among the participants with relapsing-onset MS, subjects reporting education for more than 12 years had a reduced risk of reaching EDSS 6 compared to subjects reporting education for less than 12 years [HR from onset 0.68 (95% CI 0.49-0.95); HR from birth 0.71 (95% CI 0.51-0.99)]. In progressive-onset MS, longer education was associated with an increased hazard to reach EDSS 6 [HR from onset 1.25 (95% CI 0.91-1.70); HR from birth 1.39 (95% CI 1.02-1.90)]. Our study shows an association of self-reported levels of education with disability progression in MS, with the highest level being protective in relapsing-onset MS. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
Full Text Available Leptomeningeal contrast enhancement (LMCE on magnetic resonance imaging (MRI is a newly recognized possible biomarker in multiple sclerosis (MS, associated with MS progression and cortical atrophy. In this study, we aimed to assess the prevalence of LMCE foci and their impact on neurodegeneration and disability. Materials. 54 patients with MS were included in the study. LMCE were detected with a 3 Tesla scanner on postcontrast fluid-attenuated inversion-recovery (FLAIR sequence. Expanded Disability Status Scale (EDSS score, number of relapses during 5 years from MS onset, and number of contrast-enhancing lesions on T1 weighted MRI were counted. Results. LMCE was detected in 41% (22/54 of patients. LMCE-positive patients had longer disease duration (p=0,0098 and higher EDSS score (p=0,039, but not a higher relapse rate (p=0,091. No association of LMCE with higher frequency of contrast-enhancing lesions on T1-weighted images was detected (p=0,3842. Analysis of covariates, adjusted for age, sex, and disease duration, revealed a significant effect of LMCE on the cortex volume (p=0.043, F=2.529, the total grey matter volume (p=0.043, F=2.54, and total ventricular volume (p=0.039, F=2.605. Conclusions. LMCE was shown to be an independent and significant biomarker of grey matter atrophy and disability in MS.
Kale, Nilufer; Magana, Setty; Agaoglu, Jale; Tanik, Osman
Recent studies have reported autonomic dysfunction (AD) in multiple sclerosis (MS), and bladder and/or bowel dysfunction, orthostatic hypotension, and cardiac adaptation disorders have been observed in a wide range of patients (15–80%). The primary aim of this study is to investigate the frequency and association of AD in MS patients, assessed by sympathetic skin response (SSR) and a symptoms questionnaire. The secondary aims are to study the association of AD and disease disability assessed by expanded disability status scale (EDSS), as well as disease duration. One hundred clinically definite MS (CDMS) patients were evaluated for autonomic nervous system (ANS) dysfunction by use of an autonomic symptoms questionnaire and SSR testing. The relationship between these methods, AD and disease-related parameters, such as the expanded disability status scale (EDSS) and disease duration were all evaluated. Sixty-five per cent of the patients presented with AD and 29% of these patients had abnormal SSR results. MS patients with high EDSS values (EDSS>4) and longer disease duration were more likely to have ANS dysfunction (p<0.0001). ANS dysfunction is not uncommon in CDMS patients and thus non-invasive investigations of AD are warranted to optimize AD evaluation and disease management. PMID:21577363
Full Text Available Background: Recent studies have reported autonomic dysfunction (AD in multiple sclerosis (MS, bladder and/or bowel dysfunction, orthostatic hypotension, and cardiac adaptation disorders have been observed in a wide range (15-80%. The primary aim of this study is to investigate the frequency and association of AD in MS patients, assessed by sympathetic skin reaction (SSR and a symptoms questionnaire. The secondary aims of this study are to study the association of AD and disease disability assessed by expanded disability status scale (EDSS, as well as disease duration. Design and Methods: 100 clinically definite MS patients were evaluated for ANS dysfunction by use of an autonomic symptoms questionnaire and SSR testing. The relationship between these methods, AD and disease-related parameters, such as the expanded disability status scale (EDSS and disease duration were all evaluated. Results: 65% of the patients presented with AD and 29% of these patients had abnormal SSR results. MS patients with high EDSS values (EDSS >4 and longer disease duration were more likely to have ANS dysfunction (p less than 0.0001. Conclusions. ANS dysfunction is not uncommon in CDMS patients and thus noninvasive investigations of AD are warranted to optimize AD evaluation and disease management.
Singh, Shailender; Dallenga, Tobias; Winkler, Anne; Roemer, Shanu; Maruschak, Brigitte; Siebert, Heike; Brück, Wolfgang; Stadelmann, Christine
Axonal damage and loss substantially contribute to the incremental accumulation of clinical disability in progressive multiple sclerosis. Here, we assessed the amount of Wallerian degeneration in brain tissue of multiple sclerosis patients in relation to demyelinating lesion activity and asked whether a transient blockade of Wallerian degeneration decreases axonal loss and clinical disability in a mouse model of inflammatory demyelination. Wallerian degeneration and acute axonal damage were determined immunohistochemically in the periplaque white matter of multiple sclerosis patients with early actively demyelinating lesions, chronic active lesions, and inactive lesions. Furthermore, we studied the effects of Wallerian degeneration blockage on clinical severity, inflammatory pathology, acute axonal damage, and long-term axonal loss in experimental autoimmune encephalomyelitis using Wallerian degeneration slow (Wld S ) mutant mice. The highest numbers of axons undergoing Wallerian degeneration were found in the perilesional white matter of multiple sclerosis patients early in the disease course and with actively demyelinating lesions. Furthermore, Wallerian degeneration was more abundant in patients harboring chronic active as compared to chronic inactive lesions. No co-localization of neuropeptide Y-Y1 receptor, a bona fide immunohistochemical marker of Wallerian degeneration, with amyloid precursor protein, frequently used as an indicator of acute axonal transport disturbance, was observed in human and mouse tissue, indicating distinct axon-degenerative processes. Experimentally, a delay of Wallerian degeneration, as observed in Wld S mice, did not result in a reduction of clinical disability or acute axonal damage in experimental autoimmune encephalomyelitis, further supporting that acute axonal damage as reflected by axonal transport disturbances does not share common molecular mechanisms with Wallerian degeneration. Furthermore, delaying Wallerian degeneration
Eldeniz Çetin, Müzeyyen; Safak, Pinar
The general purpose of the present study is to determine the relationship between direct and indirect preference assessments of individuals with severe and multiple disabilities (SMD) and the relationship between the direct preference assessments (single-stimulus, paired-stimulus, and multiple-stimulus) as applied to individuals with SMD, and to…
Lee, Youngmee; Jeong, Sung-Wook; Kim, Lee-Suk
The aim of this study was to examine the efficacy of a new habilitation approach, augmentative and alternative communication (AAC) intervention using a voice output communication aid (VOCA), in improving speech perception, speech production, receptive vocabulary skills, and communicative behaviors in children with cochlear implants (CIs) who had multiple disabilities. Five children with mental retardation and/or cerebral palsy who had used CIs over two years were included in this study. Five children in the control group were matched to children who had AAC intervention on the basis of the type/severity of their additional disabilities and chronological age. They had limited oral communication skills after cochlear implantation because of their limited cognition and oromotor function. The children attended the AAC intervention with parents once a week for 6 months. We evaluated their performance using formal tests, including the monosyllabic word tests, the articulation test, and the receptive vocabulary test. We also assessed parent-child interactions. We analyzed the data using a one-group pretest and posttest design. The mean scores of the formal tests performed in these children improved from 26% to 48% in the phoneme scores of the monosyllabic word tests, from 17% to 35% in the articulation test, and from 11 to 18.4 in the receptive vocabulary test after AAC intervention (all p .05). The frequency of spontaneous communicative behaviors (i.e., vocalization, gestures, and words) and imitative words significantly increased after AAC intervention (p multiple disabilities who had very limited oral communication skills after cochlear implantation. Copyright © 2013. Published by Elsevier Ireland Ltd.
Ruano, Luis; Portaccio, Emilio; Goretti, Benedetta; Niccolai, Claudia; Severo, Milton; Patti, Francesco; Cilia, Sabina; Gallo, Paolo; Grossi, Paola; Ghezzi, Angelo; Roscio, Marco; Mattioli, Flavia; Stampatori, Chiara; Trojano, Maria; Viterbo, Rosa Gemma; Amato, Maria Pia
There is limited and inconsistent information on the clinical determinants of cognitive impairment (CI) in multiple sclerosis (MS). The aim of this study was to compare the prevalence and profile of CI across MS disease subtypes and assess its clinical determinants. Cognitive performance was assessed through the Brief Repeatable Battery and the Stroop test in consecutive patients with MS referred to six Italian centers. CI was defined as impairment in ⩾ 2 cognitive domains. A total of 1040 patients were included, 167 with clinically isolated syndrome (CIS), 759 with relapsing remitting (RR), 74 with secondary progressive (SP), and 40 with primary progressive (PP) disease course. The overall prevalence of CI was 46.3%; 34.5% in CIS, 44.5% in RR, 79.4% in SP, and 91.3% in PP. The severity of impairment and the number of involved domains were significantly higher in SP and primary progressive multiple sclerosis (PPMS) than in CIS and RR. In multivariable logistic regression analysis, the presence of CI was significantly associated with higher Expanded Disability Status Scale (EDSS) and older age. CI is present in all MS subtypes since the clinical onset and its frequency is increased in the progressive forms, but these differences seem to be more associated with patient age and physical disability than to disease subtype per se.
Paling, David; Thade Petersen, Esben; Tozer, Daniel J; Altmann, Daniel R; Wheeler-Kingshott, Claudia A M; Kapoor, Raju; Miller, David H; Golay, Xavier
Alterations in the overall cerebral hemodynamics have been reported in multiple sclerosis (MS); however, their cause and significance is unknown. While potential venous causes have been examined, arterial causes have not. In this study, a multiple delay time arterial spin labeling magnetic resonance imaging sequence at 3T was used to quantify the arterial hemodynamic parameter bolus arrival time (BAT) and cerebral blood flow (CBF) in normal-appearing white matter (NAWM) and deep gray matter in 33 controls and 35 patients with relapsing-remitting MS. Bolus arrival time was prolonged in MS in NAWM (1.0±0.2 versus 0.9±0.2 seconds, P=0.031) and deep gray matter (0.90±0.18 versus 0.80±0.14 seconds, P=0.001) and CBF was increased in NAWM (14±4 versus 10±2 mL/100 g/min, P=0.001). Prolonged BAT in NAWM (P=0.042) and deep gray matter (P=0.01) were associated with higher expanded disability status score. This study demonstrates alteration in cerebral arterial hemodynamics in MS. One possible cause may be widespread inflammation. Bolus arrival time was longer in patients with greater disability independent of atrophy and T2 lesion load, suggesting alterations in cerebral arterial hemodynamics may be a marker of clinically relevant pathology.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Oliva, Doretta; Buonocunto, Francesca; Sacco, Valentina; D'Amico, Fiora; Navarro, Jorge; Lanzilotti, Crocifissa; De Tommaso, Marina; Megna, Marisa
Interventions for post-coma persons, who have emerged from a minimally conscious state but present with extensive neuro-motor impairment and lack of or minimal verbal skills, need to promote occupation and communication through the use of assistive technology. These two studies were aimed at assessing two technology-aided programs to promote leisure engagement and communication for three post-coma participants with multiple disabilities. Study I assessed a program to allow a woman and a man with extensive neuro-motor impairment and lack of speech to switch on music and videos, make requests to caregivers, and send messages to (communicate with) relevant partners and receive messages from those partners. Study II assessed a program to allow a post-coma woman with extensive motor impairment and reduced verbal behavior to activate music, videos and requests, send and receive messages, and make telephone calls. Data showed that both programs were successful. The participants of Study I managed leisure engagement, requests, as well as text messaging. The participant of Study II showed consistent leisure engagement, text messaging, and telephone calls. Assistive technology can be profitably used to provide post-coma persons with multiple disabilities relevant leisure and communication opportunities.
This study intends to research experiences of employees of ambulatory and stationary residential facilities for people with mental and multiple disabilities and family members concerning the health care of the target group. A qualitative research design was applied. As a data collection tool expert interviews were used. Proxy-interviews of employees of ambulatory and stationary residential facilities for people with mental and multiple disabilities and of family members were carried out. In total, 21 interviews could be evaluated with the software program MAXQDA. In particular, the results show that interviewees experienced or perceived a lack of individual time, prescribed measurements, conducted interventions and measurements, etc in the health care field of independent physicians. Systematic, structural, qualification-related and financial limitations impede a high-quality care for the target group. Further studies are necessary to receive differentiated knowledge about the health situation of the target group and to optimize the health care provision. © Georg Thieme Verlag KG Stuttgart · New York.
Full Text Available Background: Multiple sclerosis (MS is a chronic inflammatory disease of the central nervous system resulting from demyelination and axonal loss. Although treatment of MS has progressed, patients continue to have attacks and treatment for such episodes remains a subject of ongoing study. The object of this study is to determine the effect of intravenous methylprednisolone (IVMP on the degree of disability in MS patients."nMethods: This cross-sectional study involved 63 patients with a definite diagnosis of MS, based on the MacDonald criteria, at the Iranian Center for Neurological Research at Imam Khomeini Hospital, Tehran, Iran, from March 2004 through March 2005. After obtaining informed consent, investigators gathered data including each patient's age, gender, pyramidal activity status, cortical, cerebellar and brain stem activity status, sensory signals in the extremities, including vibration, touch, pain, position, visual status, as well as bladder and intestinal activity, and Expanded Disability Status Scale (EDSS score. SPSS version 11 was used for data analysis."nResults: A five-day regimen of IVMP (5g significantly reduced the immediate post-treatment score from 4.595 to 3.635, which represents a 96% improvement in the EDSS. The greatest change in functional system disability was seen in the pyramidal system with a mean score of 1.13. After treatment, the rate of disability reduction in the sensory system, cerebellum, vision, bladder and intestinal activity was 0.57, 0.49, 0.46, 0.4, and 0.38, respectively. Patients who had experienced fewer relapses responded better to treatment. There was no statistically significant relationship between patient age and the level of response to treatment. However, the rate of disability reduction after treatment was greater in males than females (p=0.05."nConclusion: These results show that IVMP treatment induces an immediate post-treatment effect that could partly account for clinical and
Full Text Available Abstract Background Multiple sclerosis (MS is an incurable chronic disease that predominantly affects young adults. It has a high socio-economic impact which increases as disability progresses. An assessment of the real costs of MS may contribute to our knowledge of the disease and to treat it more efficiently. Our objective is to assess the direct and indirect costs of MS from a societal perspective, in patients monitored in our MS Unit (Baix Llobregat, Catalonia and grouped according to their disability (EDSS. Methods We analysed data from 200 MS patients, who answered a questionnaire on resource consumption, employment and economical status. Mean age was 41.6 years, mean EDSS 2.7, 65.5% of patients were female, 79.5% had a relapsing-remitting course, and 67.5% of them were receiving immunomodulatory treatment (IT. Patients were grouped into five EDSS stages. Data from the questionnaires, hospital charts, Catalan Health Service tariffs, and figures from Catalan Institute of Statistics were used to calculate the direct and indirect costs. The cost-of-illness method, and the human capital approach for indirect costs, were applied. Sensitivity analyses were performed to strengthen results. Results The mean total annual cost of MS per patient results 24272 euros. This cost varied according to EDSS: 14327 euros (EDSS = 0, 18837 euros (EDSS = 1–3, 27870 euros (EDSS = 3.5–5.5, 41198 euros (EDSS = 6–7 and 52841 euros (EDSS>7.5. When the mean total annual costs was adjusted by the mean % of patients on IT in our Unit (31% the result was 19589 euros. The key-drivers for direct costs were IT in low EDSS stages, and caregiver costs in high stages. Indirect costs were assessed in terms of the loss of productivity when patients stop working. Direct costs accounted for around 60% of total costs in all EDSS groups. IT accounts from 78% to 11% of direct costs, and decreased as disability progressed. Conclusion The total mean social costs of MS in a
Casado, Virginia; Martínez-Yélamos, Sergio; Martínez-Yélamos, Antonio; Carmona, Olga; Alonso, Lucia; Romero, Lucia; Moral, Esther; Gubieras, Laura; Arbizu, Txomin
Background Multiple sclerosis (MS) is an incurable chronic disease that predominantly affects young adults. It has a high socio-economic impact which increases as disability progresses. An assessment of the real costs of MS may contribute to our knowledge of the disease and to treat it more efficiently. Our objective is to assess the direct and indirect costs of MS from a societal perspective, in patients monitored in our MS Unit (Baix Llobregat, Catalonia) and grouped according to their disability (EDSS). Methods We analysed data from 200 MS patients, who answered a questionnaire on resource consumption, employment and economical status. Mean age was 41.6 years, mean EDSS 2.7, 65.5% of patients were female, 79.5% had a relapsing-remitting course, and 67.5% of them were receiving immunomodulatory treatment (IT). Patients were grouped into five EDSS stages. Data from the questionnaires, hospital charts, Catalan Health Service tariffs, and figures from Catalan Institute of Statistics were used to calculate the direct and indirect costs. The cost-of-illness method, and the human capital approach for indirect costs, were applied. Sensitivity analyses were performed to strengthen results. Results The mean total annual cost of MS per patient results 24272 euros. This cost varied according to EDSS: 14327 euros (EDSS = 0), 18837 euros (EDSS = 1–3), 27870 euros (EDSS = 3.5–5.5), 41198 euros (EDSS = 6–7) and 52841 euros (EDSS>7.5). When the mean total annual costs was adjusted by the mean % of patients on IT in our Unit (31%) the result was 19589 euros. The key-drivers for direct costs were IT in low EDSS stages, and caregiver costs in high stages. Indirect costs were assessed in terms of the loss of productivity when patients stop working. Direct costs accounted for around 60% of total costs in all EDSS groups. IT accounts from 78% to 11% of direct costs, and decreased as disability progressed. Conclusion The total mean social costs of MS in a cohort from Baix
Full Text Available Introduction. The Expanded Disability Status Scale (EDSS is the most widely used disability measure in multiple sclerosis (MS. The effect of fatigability on EDSS components has been underreported to date. Objective We investigated daytime variability in EDSS score and EDSS components - functional scores (FS and walking distance (WD up to 500 m, in MS patients who underwent a standardized fatiguing exercise. Methods. Twenty-four patients with relapsing-remitting MS (n = 7, secondary-progressive MS (n = 8 and primary-progressive MS (n = 9 were included. Exclusion criteria were as follows: current MS relapse, infection/fever/flu-like symptoms, conditions prohibiting safe exercise testing, current medication affecting fatigue. One trained examiner performed baseline (BL and follow-up (FU assessments (FU1 after a standardized fatiguing exercise, FU2 after rest over a single day. EDSS score change of ≥1 point if BL EDSS score was <5.5 or of ≥0.5 point if BL EDSS score was ≥5.5 were considered clinically meaningful. Results. In progressive MS subtypes, WD decreased at FU1, but recovered at FU2, more so in secondaryprogressive MS subgroup with the highest BL EDSS score. Although BL EDSS scores (median, 5.0; range 4.0-6.5 and FS remained relatively stable over repeated assessments in the total group, a clinically meaningful transitory post-exercise EDSS score increase was observed in three patients with progressive MS. Conclusion. WD seems to be more influenced by fatigability than the total EDSS score, more so in patients with progressive MS and higher disability. WD should be assessed after rest and this strategy should be implemented into protocols of clinical trials recruiting patients with progressive MS phenotypes.
Tacchino, Andrea; Bove, Marco; Roccatagliata, Luca; Luigi Mancardi, Giovanni; Uccelli, Antonio; Bonzano, Laura
Patients with Multiple Sclerosis (PwMS) with severe sensorimotor and cognitive deficits show reduced ability in motor sequence learning. Conversely, in PwMS with minimal disability (EDSS≤2), showing only subtle neurological impairments and no particular deficits in everyday life activities, motor sequence learning has been poorly addressed. Here, we investigated whether PwMS with minimal disability already show a specific impairment in motor sequence learning and which component of this process can be first affected in MS. We implemented a serial reaction time task based on thumb-to-finger opposition movements in response to visual stimuli. Each session included 14 blocks of 120 stimuli presented randomly or in ten repetitions of a 12-item sequence. Random (R) and sequence (S) blocks were temporally alternated (R1, R2, S1/S5, R3, S6/S10, R4). Random blocks were designed to evaluate the motor component; sequence blocks, beside the motor component, allowed to discriminate the procedural performance. Twenty-two PwMS and 22 control healthy subjects were asked to perform the task under implicit or explicit instructions (11 subjects for each experimental condition). PwMS with minimal disability improved motor performance in random blocks reducing response time with practice with a trend similar to control subjects, suggesting that short-term learning of simple motor tasks is nearly preserved at this disease stage. Conversely, they found difficulties in sequence-specific learning in implicit and explicit condition, with more pronounced impairment in the implicit condition. These findings could suggest an involvement of different circuits in implicit and explicit sequence learning that could deteriorate at different disease stages. Copyright © 2014 Elsevier B.V. All rights reserved.
Schoonheim, M M; Geurts, Jjg; Wiebenga, O T; De Munck, J C; Polman, C H; Stam, C J; Barkhof, F; Wink, A M
Cognitive dysfunction in multiple sclerosis (MS) has a large impact on the quality of life and is poorly understood. The aim of this study was to investigate functional network integrity in MS, and relate this to cognitive dysfunction and physical disability. Resting state fMRI scans were included of 128 MS patients and 50 controls. Eigenvector centrality mapping (ECM) was applied, a graph analysis technique that ranks the importance of brain regions based on their connectivity patterns. Significant ECM changes were related to physical disability and cognitive dysfunction. In MS patients, ECM values were increased in bilateral thalamus and posterior cingulate (PCC) areas, and decreased in sensorimotor and ventral stream areas. Sensorimotor ECM decreases were related to higher EDSS (rho = -0.24, p = 0.007), while ventral stream decreases were related to poorer average cognition (rho = 0.23, p = 0.009). The thalamus displayed increased connectivity to sensorimotor and ventral stream areas. In MS, areas in the ventral stream and sensorimotor cortex appear to become less central in the entire functional network of the brain, which is associated with clinico-cognitive dysfunction. The thalamus, however, displays increased connectivity with these areas. These findings may aid in further elucidating the function of functional reorganization processes in MS. © The Author(s) 2013.
D'hooghe, M B; Haentjens, P; Nagels, G; Garmyn, M; De Keyser, J
Sunlight and vitamin D have been inversely associated with the risk of multiple sclerosis (MS). We investigated sunlight exposure and sun sensitivity in relation to disability progression in MS. We conducted a survey among persons with MS, registered by the Flemish MS society, Belgium, and stratified data according to relapsing-onset and progressive-onset MS. We used Kaplan-Meier survival and Cox proportional hazard regression analyses with time to Expanded Disability Status Scale (EDSS) 6 as outcome measure. Hazard ratios for the time from onset and from birth were calculated for the potentially predictive variables, adjusting for age at onset, gender and immunomodulatory treatment. 704 (51.3%) of the 1372 respondents had reached EDSS 6. In relapsing-onset MS, respondents reporting equal or higher levels of sun exposure than persons of the same age in the last 10 years had a decreased risk of reaching EDSS 6. In progressive-onset MS, increased sun sensitivity was associated with an increased hazard of reaching EDSS 6. The association of higher sun exposure with a better outcome in relapsing-onset MS may be explained by either a protective effect or reverse causality. Mechanisms underlying sun sensitivity might influence progression in progressive-onset MS.
Makel, Matthew C; Kell, Harrison J; Lubinski, David; Putallaz, Martha; Benbow, Camilla P
The educational, occupational, and creative accomplishments of the profoundly gifted participants (IQs ⩾ 160) in the Study of Mathematically Precocious Youth (SMPY) are astounding, but are they representative of equally able 12-year-olds? Duke University's Talent Identification Program (TIP) identified 259 young adolescents who were equally gifted. By age 40, their life accomplishments also were extraordinary: Thirty-seven percent had earned doctorates, 7.5% had achieved academic tenure (4.3% at research-intensive universities), and 9% held patents; many were high-level leaders in major organizations. As was the case for the SMPY sample before them, differential ability strengths predicted their contrasting and eventual developmental trajectories-even though essentially all participants possessed both mathematical and verbal reasoning abilities far superior to those of typical Ph.D. recipients. Individuals, even profoundly gifted ones, primarily do what they are best at. Differences in ability patterns, like differences in interests, guide development along different paths, but ability level, coupled with commitment, determines whether and the extent to which noteworthy accomplishments are reached if opportunity presents itself. © The Author(s) 2016.
Perifano, A; Scelles, R
In this paper, we present the results of research conducted on the psychological distress of lysosomal-disease-affected children. Lysosomal diseases are rare genetic diseases most often leading to severe disabilities, both psychological and physiological. As frequently reported by their relatives, affected children experience nervous breakdowns, which are sometimes treated with antidepressant prescriptions. However, mental impairment as well physical disabilities can prevent children from making their pain noticed and identified by their relatives. This raises a new research question: when disabilities are severe, how should the psychological distress of affected children be identified? Recent studies on the care of children with multiple disabilities (San Salavadour 2000; Scelles 2003; Camelio 2006; Pautrel, 2009) have used the children's family and caregivers to access their feelings, considered to be translators of children's feelings because they understand their nonverbal language (Camelio, 2006). Using this methodology, four parents from the French not-for-profit association called "VML" (Vaincre les maladies lysosomales) and four professionals were involved in semi-structured interviews. The goal of these interviews was to identify signs of possible psychological suffering, the context in which those signs were expressed, the meaning and the value attributed to it by the family and caregivers, and the reaction as well as an evaluation of that reaction. Thirteen children were involved, 12 of whom were described as having shown signs of psychological distress. Six lysosomal diseases were represented. Two types of signs were reported: active signs (e.g., agitation, screaming, crying) and passive signs (e.g., no communication, withdrawal, lack of facial expression). Most of the time, passive signs were interpreted by the family and caregivers as evidence of deep psychological distress. The meanings of both types of sign were the following: fear, anxiety
Solanky, Bhavana S.; Muhlert, Nils; Tur, Carmen; Edden, Richard A. E.; Wheeler-Kingshott, Claudia A. M.; Miller, David H.; Thompson, Alan J.; Ciccarelli, Olga
Neurodegeneration is thought to be the major cause of ongoing, irreversible disability in progressive stages of multiple sclerosis. Gamma-aminobutyric acid is the principle inhibitory neurotransmitter in the brain. The aims of this study were to investigate if gamma-aminobutyric acid levels (i) are abnormal in patients with secondary progressive multiple sclerosis compared with healthy controls; and (ii) correlate with physical and cognitive performance in this patient population. Thirty patients with secondary progressive multiple sclerosis and 17 healthy control subjects underwent single-voxel MEGA-PRESS (MEscher-GArwood Point RESolved Spectroscopy) magnetic resonance spectroscopy at 3 T, to quantify gamma-aminobutyric acid levels in the prefrontal cortex, right hippocampus and left sensorimotor cortex. All subjects were assessed clinically and underwent a cognitive assessment. Multiple linear regression models were used to compare differences in gamma-aminobutyric acid concentrations between patients and controls adjusting for age, gender and tissue fractions within each spectroscopic voxel. Regression was used to examine the relationships between the cognitive function and physical disability scores specific for these regions with gamma-aminobuytric acid levels, adjusting for age, gender, and total N-acetyl-aspartate and glutamine-glutamate complex levels. When compared with controls, patients performed significantly worse on all motor and sensory tests, and were cognitively impaired in processing speed and verbal memory. Patients had significantly lower gamma-aminobutyric acid levels in the hippocampus (adjusted difference = −0.403 mM, 95% confidence intervals −0.792, −0.014, P = 0.043) and sensorimotor cortex (adjusted difference = −0.385 mM, 95% confidence intervals −0.667, −0.104, P = 0.009) compared with controls. In patients, reduced motor function in the right upper and lower limb was associated with lower gamma-aminobutyric acid
National and international publications indicate a higher importance of people with disabilities in health and nursing care. From the international literature it can be seen that for this target group the hospital care is to be regarded as deficient in many ways. This project intends to study on a qualitative exploratory basis experiences of employees of outpatient and residential care facilities for people with mental and multiple disabilities and family members of the target group concerning their experiences in health and nursing care. 21 guided interviews with employees of outpatient and in-patient residential facilities for people with mental and multiple disabilities and family members of the target group were conducted. 21 interviews could be evaluated according to Grounded Theory with the software program MAXQDA. The results show above all that in the perception and from the experience of the interviewees mainly a "lack" exists in the care of the target group, e. g., in time, staff, resources, qualification, cooperation and so forth. Employees of outpatient and inpatient residential facilities for people with mental and multiple disabilities and family members must contribute to a high degree to the care in hospitals, so that nursing and health measures are performed. The results point to an inadequate care of people with disabilities in hospitals. It is necessary to reflect critically on the medical and nursing care and to develop adequate measures, concepts, interventions and policies. © Georg Thieme Verlag KG Stuttgart · New York.
Mensch, Sonja M; Rameckers, Eugène A A; Echteld, Michael A; Evenhuis, Heleen M
Based on a systematic review, psychometric characteristics of currently available instruments on motor abilities of children with disabilities were evaluated, with the aim to identify candidates for use in children with severe multiple (intellectual and motor) disabilities. In addition, motor abilities are essential for independent functioning, but are severely compromised in these children. The methodological quality of all studies was evaluated with the Consensus Based Standards for the Selection of Health Status Measurement Instruments (COSMIN) Checklist; overall levels of evidence per instrument were based on the Cochrane Back Review Group strategy. As a result, 18 studies with a total of eight instruments, developed for children with cerebral palsy (CLA, GMFM-88 and LE85), spinal muscular atrophy (MHFMS), neuromuscular diseases (MFM), disabilities 0-6 years (VAB, WeeFIM), and one developed specifically for children with severe multiple disabilities (TDMMT) were found. Strong levels of evidence were found for construct validity of LE85 and MFM and for responsiveness of WeeFIM, but reliability studies of these instruments had a limited methodological quality. Up to now studies of the TDMMT resulted in limited and unknown evidence for structural validity due to the poor methodological quality of reliability studies. In a next step, the clinical suitability of the instruments for children with severe multiple disabilities will be evaluate. Copyright © 2015 Elsevier Ltd. All rights reserved.
Lancioni, G.E.; Singh, N.N.; O'Reilly, M.F.; Sigafoos, J.; Didden, H.C.M.; Smaldone, A.; Martire, M.L. La
A man with multiple disabilities was taught to use single vs repeated performance of simple motor schemes as different responses Specifically, single and double emissions of a finger movement served as two separate responses, which allowed direct access to different environmental stimuli via
Lancioni, G.E.; Singh, N.N.; O'Reilly, M.F.; Sigafoos, J.; Didden, H.C.M.; Oliva, D.; Cingolani, E.
The study was an effort to help a girl with multiple disabilities increase object manipulation responses and reduce hand mouthing, carried out according to an ABAB sequence (in which A represented baseline phases; B, treatment phases) and including a 3-month follow-up. During the baseline phases, a
Shih, Ching-Hsiang; Shih, Ching-Tien
This study evaluated whether two people with multiple disabilities who could not easily use a computer through a standard input device (i.e., mouse or trackball) would be able to improve their pointing performance using thumb poke with a standard trackball through a Dynamic Trackball-Pointing Assistive Program (DTPAP) and a newly developed…
Phasha, T. N.; Nyokangi, D.
This paper reports part of the findings of the study which investigated sexual violence at two schools catering specifically for learners with mild intellectual disability in Gauteng Province. It looks particularly on participants' suggestions for addressing sexual violence in such school. A multiple case study within the qualitative research…
Shih, Ching-Hsiang; Chang, Man-Ling; Shih, Ching-Tien
This study evaluated whether two people with multiple disabilities and minimal motor behavior would be able to improve their pointing performance using finger poke ability with a mouse wheel through a Dynamic Pointing Assistive Program (DPAP) and a newly developed mouse driver (i.e., a new mouse driver replaces standard mouse driver, changes a…
Daams, M.; Weiler, F.; Steenwijk, M.D.; Hahn, H.K.; Geurts, J.J.G.; Vrenken, H.; van Schijndel, R.A.; Balk, L.J.; Tewarie, P.; Tillema, J.M.; Killestein, J.; Uitdehaag, B.M.J.; Barkhof, F.
Background: The majority of patients with multiple sclerosis (MS) present with spinal cord pathology. Spinal cord atrophy is thought to be a marker of disease severity, but in long-disease duration its relation to brain pathology and clinical disability is largely unknown. Objective: Our aim was to
Lund, Kaitlyn; McLaughlin, T. F.; Neyman, Jen; Everson, Mary
The purpose of this study was to evaluate the effects of a Direct Instruction (DI) flashcard system paired with a math racetrack to teach basic multiplication facts to two elementary students diagnosed with learning disabilities. The study was conducted in a resource room which served intermediate aged elementary students. The school was located…
Horn, Eva; Kang, Jean
Young children with multiple disabilities have unique needs and challenges. Many of these young children struggle to communicate their wants and needs, to freely move their body to access and engage their world, and to learn abstract concepts and ideas. Professionals and families working together must identify the individual supports each child…
This study investigated the effectiveness of a program designed to train paraeducators to use prompting strategies to teach students with moderate to severe intellectual and multiple disabilities. The paraeducator training program contained three components: a) an initial training on using task direction, time delay, most to least prompting, and…
Shih, Ching-Hsiang; Shih, Ching-Tien; Chu, Chiung-Ling
The latest researches adopted software technology turning the Nintendo Wii Balance Board into a high performance change of standing posture (CSP) detector, and assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture). This study extends Wii Balance Board…
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Alberti, Gloria; Bellini, Domencio; Oliva, Doretta; Boccasini, Adele; La Martire, Maria L.; Signorino, Mario
A variety of technology-aided programs have been developed to help persons with congenital or acquired multiple disabilities access preferred stimuli or choose among stimulus options. The application of those programs may pose problems when the participants have very limited behavior repertoires and are unable to use conventional responses and…
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Didden, Robert; Oliva, Doretta
A recent study has shown that microswitch clusters (i.e., combinations of microswitches) and contingent stimulation could be used to increase adaptive responding and reduce dystonic/spastic behavior in two children with multiple disabilities [Lancioni, G. E., Singh, N. N., Oliva, D., Scalini, L., & Groeneweg, J. (2003). Microswitch clusters to…
Langeskov-Christensen, D; Feys, P; Baert, I
BACKGROUND: The severity of walking impairment in persons with multiple sclerosis (pwMS) at different levels on the expanded disability status scale (EDSS) is unclear. Furthermore, it is unclear if the EDSS is differently related to performed- and perceived walking capacity tests. AIMS: To quantify...
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Oliva, Doretta; Smaldone, Angela; La Martire, Maria L.; Alberti, Gloria; Scigliuzzo, Francesca
In a recent single-case study, we showed that a new verbal-instruction system, ensuring the automatic presentation of step instructions, was beneficial for promoting the task performance of a woman with multiple disabilities (including blindness). The present study was aimed at replicating and extending the aforementioned investigation with three…
Campaña, Laura V.; Ouimet, Donald A.
Since its creation in the early 1980s, Light Box, a product developed by the American Printing House for the Blind (APH) that is designed for working on functional vision tasks with children who have visual impairments or multiple disabilities, has been an effective tool to help teach children with visual impairments to locate and track items…
Lancioni, Giulio E.; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Lang, Russell
Background: A camera-based microswitch technology was recently developed to monitor small facial responses of persons with multiple disabilities and allow those responses to control environmental stimulation. This study assessed such a technology with 2 new participants using slight variations of previous responses. Method: The technology involved…
Nabeyama, Bobby; Sturmey, Peter
The study analyzed the effects of self-recording and behavioral skills training on guarding responses of 3 staff members while they assisted 3 students with multiple disabilities to ambulate. The intervention increased the percentage of correct posture and guarding responses and the distance that students ambulated. These effects generalized when…
Sinnakaruppan, Indrani; Macdonald, Kirsty; McCafferty, Aileen; Mattison, Paul
The objective of this study was to explore the relationship between the Perception of Control Scale (PCS) and other measures that incorporate physical disability, optimism, self-efficacy and hopelessness components in a Multiple Sclerosis (MS) sample. One hundred and fifteen participants comprising 44 males and 71 females with a mean age of 45.65…
Sung, Connie; Chiu, Chung-Yi; Lee, Eun-Jeong; Bezyak, Jill; Chan, Fong; Muller, Veronica
The main objective of this study was to examine the mediational and moderational effect of exercise, diet, and stress management on the relationship between functional disability and health-related quality of life. Quantitative descriptive research design using multiple regression and correlation techniques was used. Participants were 215…
A prospective web-based patient-centred interactive study of long-term disabilities, disabilities perception and health-related quality of life in patients with multiple sclerosis in The Netherlands: the Dutch Multiple Sclerosis Study protocol.
Jongen, Peter Joseph; Heerings, Marco; Lemmens, Wim A; Donders, Rogier; van der Zande, Anneke; van Noort, Esther; Kool, Anton
In the past two decades the widespread use of disease modifying drugs with moderate to strong efficacy has changed the natural course of multiple sclerosis (MS). Health care professionals, researchers, patient organizations and health authorities are in need of recent information about the objectified and subjective long-term clinical outcomes in MS patients. Such information is scarce. We started a prospective, web-based, patient-centred, interactive study of long-term disabilities, disabilities perception and health-related quality of life (HRQoL) in MS patients in The Netherlands (Dutch Multiple Sclerosis Study). The study has an on online patient-driven inclusion and online acquisition of patient-reported outcomes (PROs). At six-months intervals participants complete the Multiple Sclerosis Impact Profile (MSIP) (disabilities and disabilities perception in seven domains and four symptoms), the Multiple Sclerosis Quality of Life-54 items (MSQoL-54), the Modified Fatigue Impact Scale-5 items (MFIS-5) and the Leeds Multiple Sclerosis Quality of Life-8 items (LMSQoL) questionnaires, and a Medication and Adherence Inventory. Every three years the Expanded Disability Status Scale (EDSS) score is assessed by phone. The monthly completion of the MFIS-5, LMSQoL and Medication and Adherence Inventory is optional. Completed questionnaires and inventories, and automatically generated scores are made available online to patients for self-monitoring and self-management purposes, and to authorized health care professionals for the evaluation of disease activity and of the effectiveness of treatments. Study duration is planned to be 15 years. Results will be analyzed periodically using means and standard deviations for continuous variables, and frequencies for categorical variables. Relations between time points, variables, patient and treatment characteristics will be evaluated in random effects repeated measures models. The Dutch Multiple Sclerosis Study is characterized by
Vaan, G. de; Vervloed, M.P.J.; Knoors, H.E.T.
Aim: Currently, there are no instruments that can validly diagnose autism spectrum disorder (ASD) in people that have an intellectual disability (ID) with additional sensory disabilities. People with these disabilities show ASD typical behaviour regardless of the presence of ASD. This makes
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Alberti, Gloria; Oliva, Doretta; Megna, Gianfranco; Iliceto, Carla; Damiani, Sabino; Ricci, Irene; Spica, Antonella
The present two studies extended research evidence on the use of microswitch technology by post-coma persons with multiple disabilities. Specifically, Study I examined whether three adults with a diagnosis of minimally conscious state and multiple disabilities could use microswitches as tools to access brief, selected stimulus events. Study II…
Walter, Scott D; Ishikawa, Hiroshi; Galetta, Kristin M; Sakai, Reiko E; Feller, Daniel J; Henderson, Sam B; Wilson, James A; Maguire, Maureen G; Galetta, Steven L; Frohman, Elliot; Calabresi, Peter A; Schuman, Joel S; Balcer, Laura J
We used high-resolution spectral-domain optical coherence tomography (SD-OCT) with retinal segmentation to determine how ganglion cell loss relates to history of acute optic neuritis (ON), retinal nerve fiber layer (RNFL) thinning, visual function, and vision-related quality of life (QOL) in multiple sclerosis (MS). Cross-sectional study. A convenience sample of patients with MS (n = 122; 239 eyes) and disease-free controls (n = 31; 61 eyes). Among MS eyes, 87 had a history of ON before enrollment. The SD-OCT images were captured using Macular Cube (200×200 or 512×128) and ONH Cube 200×200 protocols. Retinal layer segmentation was performed using algorithms established for glaucoma studies. Thicknesses of the ganglion cell layer/inner plexiform layer (GCL+IPL), RNFL, outer plexiform/inner nuclear layers (OPL+INL), and outer nuclear/photoreceptor layers (ONL+PRL) were measured and compared in MS versus control eyes and MS ON versus non-ON eyes. The relation between changes in macular thickness and visual disability was also examined. The OCT measurements of GCL+IPL and RNFL thickness; high contrast visual acuity (VA); low-contrast letter acuity (LCLA) at 2.5% and 1.25% contrast; on the 25-item National Eye Institute Visual Function Questionnaire (NEI-VFQ-25) and 10-Item Neuro-Ophthalmic Supplement composite score. Macular RNFL and GCL+IPL were significantly decreased in MS versus control eyes (Pvisual function and vision-specific QOL in MS, and may serve as a useful structural marker of disease. Our findings parallel those of magnetic resonance imaging studies that show gray matter disease is a marker of neurologic disability in MS. Proprietary or commercial disclosure may be found after the references. Copyright © 2012 American Academy of Ophthalmology. Published by Elsevier Inc. All rights reserved.
Charron, Shannon; McKay, Kyla A; Tremlett, Helen
Physical activity may be neuroprotective in multiple sclerosis (MS). One review (2011) of exercise and MS disability was inconclusive, but highlighted the need for more studies. To perform an updated systematic literature review examining the relationship between physical activity and physical ability outcomes in persons with MS. EMBASE and MEDLINE were searched for original interventional studies (2011-2016) evaluating exercise on quantitative outcomes of physical disability in MS. We also assessed any reported adverse outcomes. Of the 153 articles identified, 12 were included; 3 examined endurance training; 6 resistance training; and 3 explored less conventional exercises, specifically, tai chi, kickboxing, and vestibular rehabilitation, each lasting 5-24 weeks. In total, 568 unique individuals were included, and >10 different scales used to assess outcomes. Endurance training provided benefits in walking ability, while mindfulness exercises (tai chi and vestibular rehabilitation), and dynamic workouts (kickboxing) led to improvements in balance and coordination. Resistance training alone did not improve walking ability, but improved lower limb muscular strength and endurance. When resistance and endurance training were combined, improvements were seen in mobility, balance and coordination. Four studies assessed discontinuation; most reported a return to pre-intervention function. Adverse outcomes were reported in 6 studies, and appeared generally mild, ranging from mild muscle soreness to exacerbation of MS symptoms. Physical activity was associated with measurable benefits on ability outcomes, but continuation is likely required to maintain benefits. While adverse events were generally mild, approximately half of studies actually reported safety outcomes. Copyright © 2018 Elsevier B.V. All rights reserved.
Thouvenot, E; Orsini, M; Daures, J-P; Camu, W
Vitamin D deficiency is a recognized risk factor for multiple sclerosis (MS) and is associated with increased disease activity. It has also been proposed that the lower the vitamin D levels are, the higher is the handicap. To refine the links between vitamin D insufficiency and disability in MS patients, a retrospective cohort analysis was performed including 181 patients prospectively followed without previous vitamin D supplementation, and age, gender, age at MS onset, MS type, MS activity, Expanded Disability Status Scale (EDSS) were analysed in correlation with plasma vitamin D levels. Vitamin D levels were significantly higher in relapsing-remitting MS than in progressive forms of MS in multivariate analyses adjusted for age, ethnicity, gender, disease duration and season (P = 0.0487). Overall, there was a negative correlation between vitamin D level and EDSS score (P = 0.0001, r = -0.33). In relapsing-remitting MS, vitamin D levels were only correlated with disability scores for EDSS 20 ng/ml of vitamin D were 2.78 times more likely to have an EDSS vitamin D deficiency is associated with higher risk of disability in MS. Vitamin D levels also correlated with the degree of disability in fully ambulatory patients with relapsing-remitting MS. These additional results support the pertinence of randomized controlled trials analysing the interest of an early vitamin D supplementation in MS patients to influence evolution of disability. © 2014 EAN.
Chamot, Eric; Kister, Ilya; Cutter, Gary R
The eight Performance Scales and three assimilated scales (PS) used in North American Research Committee on Multiple Sclerosis (NARCOMS) registry surveys cover a broad range of neurologic domains commonly affected by multiple sclerosis (mobility, hand function, vision, fatigue, cognition, bladder/bowel, sensory, spasticity, pain, depression, and tremor/coordination). Each scale consists of a single 6-to-7-point Likert item with response categories ranging from "normal" to "total disability". Relatively little is known about the performances of the summary index of disability derived from these scales (the Performance Scales Sum or PSS). In this study, we demonstrate the value of a combination of classical and modern methods recently proposed by the Patient-Reported Outcome Measurement Information System (PROMIS) network to evaluate the psychometric properties of the PSS and derive an improved measure of global disability from the PS. The study sample included 7,851adults with MS who completed a NARCOMS intake questionnaire between 2003 and 2011. Factor analysis, bifactor modeling, and item response theory (IRT) analysis were used to evaluate the dimension(s) of disability underlying the PS; calibrate the 11 scales; and generate three alternative summary scores of global disability corresponding to different model assumptions and practical priorities. The construct validity of the three scores was compared by examining the magnitude of their associations with participant's background characteristics, including unemployment. We derived structurally valid measures of global disability from the PS through the proposed methodology that were superior to the PSS. The measure most applicable to clinical practice gives similar weight to physical and mental disability. Overall reliability of the new measure is acceptable for individual comparisons (0.87). Higher scores of global disability were significantly associated with older age at assessment, longer disease duration
Full Text Available Background Multiple sclerosis (MS is a chronic disease which is caused by demyelination in the central nervous system (CNS in young adults. This disease affects independence and the ability to participate in family and community activities, thus affecting the quality of life. Objectives This cross-sectional study was designed to investigate the associations between fatigue, disability, and mobility and the quality of life in patients with MS in the city of Semnan, Iran. Patients and Methods Sixty-six MS patients completed the Rivermead mobility index (RMI, Guy’s neurological disability scale (GNDS, modified fatigue impact scale (MFIS, and Multiple sclerosis quality of life-54 (MSQL-54 questionnaires, which assessed the physical and mental health of the participants in 12 dimensions. Results The results of this study showed significant correlations between fatigue (P = 0.002, disability (P 0.05. Conclusions Our findings indicate that fatigue and disability may affect a patient’s quality of life. Although mobility may affect the overall quality of life in patients with multiple sclerosis, it may also affect the physical health of MS patients. Therefore, the identification of factors affecting the quality of life in MS patients may help in predicting the quality of life, and designing a rehabilitation protocol.
Lancioni, Giulio E; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N; O'Reilly, Mark F; Green, Vanessa A; Furniss, Fred
Assessing a new camera-based microswitch technology, which did not require the use of color marks on the participants' face. Two children with extensive multiple disabilities participated. The responses selected for them consisted of small, lateral head movements and mouth closing or opening. The intervention was carried out according to a multiple probe design across responses. The technology involved a computer with a CPU using a 2-GHz clock, a USB video camera with a 16-mm lens, a USB cable connecting the camera and the computer, and a special software program written in ISO C++ language. The new technology was satisfactorily used with both children. Large increases in their responding were observed during the intervention periods (i.e. when the responses were followed by preferred stimulation). The new technology may be an important resource for persons with multiple disabilities and minimal motor behavior.
Sartori, E; Belliard, S; Chevrier, C; Trebon, P; Chaperon, J; Edan, G
Cognitive deficit in multiple sclerosis (MS) is a frequent early feature in the disease course, which conditions patients' overall disability. The goals of this study were to validate a reproducible brief screening battery written in French and to examine cognitive risk profiles in patients with a mild physical disability. Cognitive performances of 40 patients with EDSS 40 years, pathological laughing-crying, unemployment. Our brief battery is an easy and reproducible tool. Completed with warning signs indicating the need for neuropsychological screening, this tool provides the practitioner with a global means of assessing disease activity and potentially therapeutic efficacy.
Poretto, Valentina; Petracca, Maria; Saiote, Catarina; Mormina, Enricomaria; Howard, Jonathan; Miller, Aaron; Lublin, Fred D; Inglese, Matilde
Optical coherence tomography (OCT) and magnetic resonance imaging (MRI) can provide complementary information on visual system damage in multiple sclerosis (MS). The objective of this paper is to determine whether a composite OCT/MRI score, reflecting cumulative damage along the entire visual pathway, can predict visual deficits in primary progressive multiple sclerosis (PPMS). Twenty-five PPMS patients and 20 age-matched controls underwent neuro-ophthalmologic evaluation, spectral-domain OCT, and 3T brain MRI. Differences between groups were assessed by univariate general linear model and principal component analysis (PCA) grouped instrumental variables into main components. Linear regression analysis was used to assess the relationship between low-contrast visual acuity (LCVA), OCT/MRI-derived metrics and PCA-derived composite scores. PCA identified four main components explaining 80.69% of data variance. Considering each variable independently, LCVA 1.25% was significantly predicted by ganglion cell-inner plexiform layer (GCIPL) thickness, thalamic volume and optic radiation (OR) lesion volume (adjusted R2 0.328, p = 0.00004; adjusted R2 0.187, p = 0.002 and adjusted R2 0.180, p = 0.002). The PCA composite score of global visual pathway damage independently predicted both LCVA 1.25% (adjusted R2 value 0.361, p = 0.00001) and LCVA 2.50% (adjusted R2 value 0.323, p = 0.00003). A multiparametric score represents a more comprehensive and effective tool to explain visual disability than a single instrumental metric in PPMS.
Krishna Kumar Ramani
Full Text Available Background: Lack of evidence in literature to show low vision care enhances the reading performance in children with Multiple Disabilities and Visual Impairment (MDVI. Aim: To evaluate the effectiveness of Low Vision Care intervention on the reading performance of children with MDVI. Materials and Methods: Three subjects who were diagnosed to have cerebral palsy and visual impairment, studying in a special school were recruited for the study. All of them underwent detailed eye examination and low vision care evaluation at a tertiary eye care hospital. A single subject multiple baseline (study design was adopted and the study period was 16 weeks. The reading performance (reading speed, reading accuracy, reading fluency was evaluated during the baseline phase and the intervention phase. The median of all the reading parameters for each week was noted. The trend of the reading performance was graphically represented in both the phases. Results: Reading speed increased by 37 Word per minute, 37 Letters per minute and 5 letters per minute for the subject 1, 2 and 3 respectively after the intervention. Reading accuracy was 84%, 91% and 86.4% at the end of the baseline period and 98.7%, 98.4% and 99% at the end of 16 weeks for subject 1, 2 and 3 respectively. Average reading fluency score was 8.3, 7.1 and 5.5 in the baseline period and 10.2, 10.2 and 8.7 in the intervention period. Conclusion: This study shows evidence of noticeable improvement in reading performance of children with MDVI using a novel study design.
Reich, Daniel S; Smith, Seth A; Gordon-Lipkin, Eliza M; Ozturk, Arzu; Caffo, Brian S; Balcer, Laura J; Calabresi, Peter A
To determine whether damage to the optic radiation (OR) in multiple sclerosis (MS) is associated with optic nerve injury and visual dysfunction. Case-control study. Referral center. Ninety referred patients with MS and 29 healthy volunteers. Magnetic resonance imaging indices along the OR were reconstructed with diffusion tensor tractography. Retinal nerve fiber layer thickness and visual acuity at high and low contrast were measured in a subset of the MS group (n = 36). All tested magnetic resonance imaging indices (fractional anisotropy [FA]; mean, parallel, and perpendicular [lambda( perpendicular)] diffusivity; T2 relaxation time; and magnetization transfer ratio) were significantly abnormal in patients with MS. Mean retinal nerve fiber layer thickness was significantly correlated with FA (r = 0.55; P 80 mum), letter acuity scores at 2.5% contrast were correlated with OR-specific FA (r = 0.55; P = .004), lambda( perpendicular) (r = -0.40; P = .04), and magnetization transfer ratio (r = 0.54; P = .01), as well as the fraction of OR volume made up of lesions (r = -0.69; P visual disability.
Full Text Available Multiple sclerosis (MS is characterized by a wide interpatient clinical variability and available biomarkers of disease severity still have suboptimal reliability. We aimed to assess immunological and MRI-derived measures of brain tissue damage in patients with different motor impairment degrees, for in vivo investigating the pathogenesis of MS-related disability. Twenty-two benign (B, 26 secondary progressive (SP, and 11 early, nondisabled relapsing-remitting (RR MS patients and 37 healthy controls (HC underwent conventional and diffusion tensor brain MRI and, as regards MS patients, immunophenotypic and functional analysis of stimulated peripheral blood mononuclear cells (PBMC. Corticospinal tract (CST fractional anisotropy and grey matter volume were lower and CST diffusivity was higher in SPMS compared to RRMS and BMS patients. CD14+IL6+ and CD4+IL25+ cell percentages were higher in BMS than in SPMS patients. A multivariable model having EDSS as the dependent variable retained the following independent predictors: grey matter volume, CD14+IL6+ and CD4+IL25+ cell percentages. In patients without motor impairment after long-lasting MS, the grey matter and CST damage degree seem to remain as low as in the earlier disease stages and an immunological pattern suggestive of balanced pro- and anti-inflammatory activity is observed. MRI-derived and immunological measures might be used as complementary biomarkers of MS severity.
Full Text Available Background: Only few papers have investigated the impact of multiple sclerosis (MS, especially MS-related fatigue and the impact of the quality of sleep on the quality of life (QoL in MS patients. Objective: The objective of this study was to measure the quality of life in MS patients and the impact of disability, fatigue and sleep quality, using statistical modeling. Materials and Methods: A cross-sectional study was conducted and data was collected from 141 MS patients, who were referred to the Mottahari Clinic, Shiraz, Iran, in 2005. Data on health-related quality of life (MSQoL-54, fatigue severity scale (FSS, and Pittsburgh sleep quality Index (PSQI were obtained in the case of all the patients. Epidemiology data concerning MS type, MS functional system score, expanded disability status scale (EDSS etc. were also provided by a qualified neurologist. Spearman a coefficient, Mann-Whitney U test, and linear regression model were used to analyze the data. Results : The mean ±SD age of 141 MS patients was 32.6±9.6 year. Thirty five (24.8% of them were male and the others were female. Eighty two (58.1% of the patients had EDSS score of ≤ 2, 36 (25.5% between 2.5 and 4.5, and 23 (16.3% ≥ 5. As per PSQI scores, two (1.4% of the patients had good sleep, 16 (11.3% had moderate sleep and 123 (87.2% had poor sleep. There was a significant high positive correlation between the quality of mental and physical health composite scores (r = 0.791, P < 0.001. There was a significant negative correlation between the quality of physical score and age (r = -0.88, P < 0.001, fatigue score (r = -0.640, P < 0.001, EDSS score (r = -0.476, P < 0.001 and PSQI (sleep quality r = -0.514, P < 0.000. Linear regression analysis showed that PSQI score, EDSS, and fatigue score were predictors in the model between the quality of physical score and covariates ( P < 0.001. Linear regression model showed that fatigue score and PSQI were predictors in the model between the
Full Text Available Objectives. The aim of our study is to examine the role of some factors (sociodemographic patterns, social relationship support, and trust in healthcare actors on structure of quality of life among the Italian elderly population, by stratifying according to presence or absence of disability. Methods. Using data of the Italian National Institute of Statistics (ISTAT survey, we obtained a sample of 25,183 Italian people aged 65+ years. Multiple Correspondence Analysis (MCA was used to test such a relationship. Results. By applying the MCA between disabled and nondisabled elderly population, we identified three dimensions: “demographic structure and social contacts,” “social relationships,” “trust in the Italian National Health Services (INHS.” Furthermore, the difference in trust on the INHS and its actors was seen among disabled and non-disabled elderly population. Conclusions. Knowledge on the concept of quality of life and its application to the elderly population either with or without disability should make a difference in both people’s life and policies and practices affecting life. New domains, such as information and trusting relationships both within and towards the care network’s nodes, are likely to play an important role in this relationship.
Steenbergen, Henderika Annegien; Van der Schans, Cees P; Van Wijck, Ruud; De Jong, Johan; Waninge, Aly
Health care organizations supporting individuals with intellectual disabilities (IDs) carry out a range of interventions to support and improve a healthy lifestyle. However, it is difficult to implement an active and healthy lifestyle into daily support. The presence of numerous intervention components, multiple levels of influence, and the explicit use of theory are factors that are considered to be essential for implementation in practice. A comprehensive written lifestyle policy provides for sustainability of a lifestyle approach. It is unknown to what extent these crucial factors for successful implementation are taken into consideration by health care organizations supporting this population. To analyze the intervention components, levels of influence, explicit use of theory, and conditions for sustainability of currently used lifestyle interventions within lifestyle approaches aiming at physical activity and nutrition in health care organizations supporting people with ID. In this descriptive multiple case study of 9 health care organizations, qualitative data of the lifestyle approaches with accompanying interventions and their components were compiled with a newly developed online inventory form. From 9 health care organizations, 59 interventions were included, of which 31% aimed to improve physical activity, 10% nutrition, and 59% a combination of both. Most (49%) interventions aimed at the educational component and less at daily (19%) and generic activities (16%) and the evaluation component (16%). Most interventions targeted individuals with ID and the professionals whereas social levels were underrepresented. Although 52% of the interventions were structurally embedded, only 10 of the 59 interventions were theory-driven. Health care organizations could improve their lifestyle approaches by using an explicit theoretical basis by expanding the current focus of the interventions that primarily concentrate on their clients and professionals toward also
Teaching Arithmetic Combinations of Multiplication and Division to Students with Learning Disabilities or Mild Intellectual Disability: The Impact of Alternative Fact Grouping and the Role of Cognitive and Learning Factors
Agaliotis, Ioannis; Teli, Afroditi
The effectiveness of two instructional interventions was investigated in the context of teaching Arithmetic Combinations (ACs) of multiplication and division to students with Learning Disabilities (LD) or Mild Intellectual Disability (MID). The intervention for the control group (LD = 20, MID = 10) was based on principles of effective instruction,…
Gates, Bob; Statham, Mark
In England, the numbers of learning disability nurses are declining; a need for urgent attention to workforce planning issues has been advocated. This paper considers views of lecturers, students and potential students as legitimate stakeholders for future education commissioning for this field of nursing. This project aimed to undertake a strategic review of learning disability nursing educational commissioning, to provide an 'evidence based' evaluation to inform future strategic commissioning of learning disability nursing for one Health Authority, UK. The project adopted a structured multiple methods approach to generate evidence from a number of data sources, this paper reports on the findings from one method [focus groups] used for two groups of stakeholders. Informants comprised 10 learning disability nursing students studying at a Higher Education Institution, 25 health and social care students studying at a Further Education College, and 6 academic staff from 5 universities; all informants were from the south of England. The method reported on in this paper is focus group methodology. Once completed, transcripts made were read in full, and subjected to content analysis. The process of content analysis led to the development of 11 theoretical categories that describe the multiplicity of views of informants, as to issues of importance for this element of the health workforce. The paper concludes by identifying key messages from these informants. It is suggested that both method and findings have national and international resonance, as stakeholder engagement is a universal issue in health care education commissioning. Copyright © 2013 Elsevier Ltd. All rights reserved.
Full Text Available Introduction: Multiple sclerosis (MS is a chronic, autoimmune and progressive multifocal demyelinating disease of the central nervous system. The aim of this study was to evaluate rehabilitation of patients with multiple sclerosis using BI (Barthel index and EDDS (Expanded Disability Status Scale.Methods: A clinical observational study was made at the clinic for physical medicine and rehabilitation in Sarajevo. We analyzed 49 patients with MS in relation of gender, age and level of disability at admission and discharge, patient disability were estimated using EDDS scale. The ability of patients in their activities of daily living were also analyzed according to the BI at admission and discharge.Results: Of the total number of patients (n=49 there were 15 men and 34 women. The average age of female patient was 42.38±13.48 and male patient 46.06±9.56. EDDS values were significantly different at the beginning and at the end of the therapy (p=0.001 as was the value of BI (p=0.001.Conclusion: MS patients, after the rehabilitation in hospital conditions show significant recovery and a reduced level of disability; they show higher independence in activities but rehabilitation demands individual approach and adjustment with what patients are currently capable of achieving.
Vaan, G. de; Vervloed, M.P.J.; Peters-Scheffer, N.C.; Gent, T. van; Knoors, H.E.T.; Verhoeven, L.T.W.
Background: It is difficult to diagnose autism spectrum disorder (ASD) in people with a combination of intellectual and sensory disabilities because of overlap in behaviour. The ASD typical behaviours of people with combined intellectual and sensory disabilities are often caused by their
Dasenbrock, Hormuzdiyar H; Smith, Seth A; Ozturk, Arzu; Farrell, Sheena K; Calabresi, Peter A; Reich, Daniel S
Visual disability is common in multiple sclerosis, but its relationship to abnormalities of the optic tracts remains unknown. Because they are only rarely affected by lesions, the optic tracts may represent a good model for assessing the imaging properties of normal-appearing white matter in multiple sclerosis. Whole-brain diffusion tensor imaging was performed on 34 individuals with multiple sclerosis and 26 healthy volunteers. The optic tracts were reconstructed by tractography, and tract-specific diffusion indices were quantified. In the multiple-sclerosis group, peripapillary retinal nerve-fiber-layer thickness and total macular volume were measured by optical coherence tomography, and visual acuity at 100%, 2.5%, and 1.25% contrast was examined. After adjusting for age and sex, optic-tract mean and perpendicular diffusivity were higher (P=.002) in multiple sclerosis. Lower optic-tract fractional anisotropy was correlated with retinal nerve-fiber-layer thinning (r=.51, P=.003) and total-macular-volume reduction (r=.59, P=.002). However, optic-tract diffusion indices were not specifically correlated with visual acuity or with their counterparts in the optic radiation. Optic-tract diffusion abnormalities are associated with retinal damage, suggesting that both may be related to optic-nerve injury, but do not appear to contribute strongly to visual disability in multiple sclerosis. Copyright © 2010 by the American Society of Neuroimaging.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Green, Vanessa A; Alberti, Gloria; Boccasini, Adele; Smaldone, Angela; Oliva, Doretta; Bosco, Andrea
Assessing automatic feedback technologies to promote safe travel and speech loudness control in two men with multiple disabilities, respectively. The men were involved in two single-case studies. In Study I, the technology involved a microprocessor, two photocells, and a verbal feedback device. The man received verbal alerting/feedback when the photocells spotted an obstacle in front of him. In Study II, the technology involved a sound-detecting unit connected to a throat and an airborne microphone, and to a vibration device. Vibration occurred when the man's speech loudness exceeded a preset level. The man included in Study I succeeded in using the automatic feedback in substitution of caregivers' alerting/feedback for safe travel. The man of Study II used the automatic feedback to successfully reduce his speech loudness. Automatic feedback can be highly effective in helping persons with multiple disabilities improve their travel and speech performance.
Norén, Niklas; Sigurd Pilesjö, Maja
Asking a question can be a highly challenging task for a person with multiple disabilities, but questions have not received much attention in research on augmentative and alternative communication (AAC). Conversation analysis is employed to examine an instance of multiparty interaction where a speech and language therapist supports a child with multiple disabilities to ask a question with a communication board. The question is accomplished through a practice where the action is built as a trajectory of interactional steps. Each step is built using ways of involvement that establish different participation spaces designed to deal with different aspects of asking a question: agreeing on the action type, the speaker and recipient, the content of the question, and then asking the question. The segmentation of a question into discrete steps and participation spaces can be used in intervention to model the construction of a question for AAC users and significant others.
Memarian, Negar; Blain-Moraes, Stefanie; Chau, Tom
To find physiologically arousing stimuli and labile physiological channels in a non-verbal adolescent with severe and multiple congenital disabilities, who did not have a reliable means of communication. The client was repeatedly presented with visual and audiovisual stimuli, representing variations of six contextual factors over three sessions in a one month period. For each stimulus, reactions were detected in the client's four peripheral autonomic nervous system signals using a rule-based classification algorithm. During the presentation of audiovisual stimuli, the number of physiological reactions significantly differed from that observed in baseline (χ(2) = 3.93, p = 0.0476). Aural stimuli articulated in an unfamiliar voice, and aural stimuli containing anticipatory patterns were also physiologically arousing. Fingertip temperature was the client's most labile physiological signal. The results of this case study suggest that physiological data may complement caregiver acumen in deciphering the reactions of non-verbal clients with severe and multiple disabilities.
Mandoj, Chiara; Renna, Rosaria; Plantone, Domenico; Sperduti, Isabella; Cigliana, Giovanni; Conti, Laura; Koudriavtseva, Tatiana
So far, no studies have been conducted to evaluate possible correlations between lipid/lipoprotein levels and the anti-phospholipid antibody (aPL) positivity in multiple sclerosis (MS). In this cross-sectional study, we aimed to investigate the relationships between serum lipid profile and aPL positivity rates in MS patients, and their possible differences among secondary-progressive MS (SPMS) patients, relapsing-remitting MS patients in remission (REM) and in relapse (REL). We included 16 SPMS, 58 REM and 26 REL. Their sera were tested for aPL (anti-cardiolipin, anti-β2glycoproteinI, anti-prothrombin, anti-annexinV), total cholesterol (TC), high-density lipoprotein cholesterol (HDL-C), low-density lipoprotein cholesterol (LDL-C), triglycerides (TG) and lipoprotein(a) levels. High TC levels were more frequent in SPMS patients than other groups (p=0.05). The REL had significantly higher rates of positivity for anti-β2glycoproteinI IgM (p<0.0001), anti-prothrombin IgG and IgM (both p=0.05) than the other groups. A significant positive correlation was found between age and both TC and LDL-C, disability and both TC and LDL-C, disease duration and LDL-C. TC levels were significantly higher (p=0.007) in anti-annexinV-IgG positive patients. The anti-annexinV-IgG positivity significantly associated with high levels of TC (p=0.002) and LDL-C (p=0.03). Our results support the hypothesis that both thrombogenic and neurodegenerative mechanisms associated with an abnormal cholesterol homeostasis might contribute to MS progression. Our study may have interesting practical implications, which could potentially open new therapeutic approaches in the context of appropriately designed clinical trials. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
Hyphantis, Thomas N; Christou, Konstantinos; Kontoudaki, Stavroula; Mantas, Christos; Papamichael, George; Goulia, Panagiota; Konitsiotis, Spyros; Mavreas, Venetsanos
The aim of the present study was to identify disease parameters, defensive styles and ego strength measurements associated with various forms of psychiatric complications in patients with multiple sclerosis (MS). Seventy-nine patients with MS participated in the study and 158 healthy subjects matched for age and sex served as controls. A wide range of clinical information was collected and the following self-report instruments were used: General Health Questionnaire, Symptom Distress Check List, Defense Style Questionnaire, MMPI Ego Strength Scale and Hostility and Direction of Hostility Questionnaire. The odds of being assessed with a psychiatric diagnosis upon interview were 6.7 times greater among patients compared to controls and 9.3 times greater among patients with recent-onset MS compared to patients with long-term disease. Psychiatric complications of MS were closely associated with age of the disease onset and the degree of disability due to MS. Additionally, higher rates of introverted hostility, adoption of maladaptive ego defenses and weakened ego strength were also closely associated with several forms of psychological distress, especially depressive symptoms. MS patients experience elevated symptoms of psychological distress, especially depressive symptoms, which are most closely associated with disease parameters. However, the crucial role of various personality traits such as ego defenses and hostility features in the psychiatric symptom formation also appear to contribute to the development of depressive symptoms. Clinicians involved in the clinical management of patients with MS should identify and modify treatment if these specific personality markers that indicate the exhaustion of the patient's resources to cope with the physical and psychological stress of the illness are present.
Mensch, Sonja M; Echteld, Michael A; Evenhuis, Heleen M; Rameckers, Eugène A A
Movakic is a newly developed instrument for measurement of motor abilities in children with severe multiple disabilities, with a satisfactory feasibility and content validity and good inter-observer and test-retest reliability. The objective of this study was to investigate its construct validity and responsiveness to change. Sixty children with severe multiple disabilities (mean age 7.7 years, range 2-16) were measured using Movakic six times during 18 months. Construct validity was assessed by correlating Movakic scores with expert judgment. In order to assess responsiveness, scores during 3-months intervals were compared (mean score-changes and intraclass correlations) during which some children experienced meaningful events influencing motor abilities and during which others experienced no such event. Forty-five percent of children had a lower cognitive development level than 6-month, 52% had Gross Motor Function Classification System level V and 37% had level IV. For 27 children all measurements were completed, six children dropped out. Construct validity was good (r=0.50-0.71). Responsiveness was demonstrated by significantly larger score changes after events than when such events did not occur. Movakic is a valid instrument for measuring motor abilities in children with severe multiple disabilities. Results suggest responsiveness to change in motor abilities after meaningful events. Copyright © 2016 Elsevier Ltd. All rights reserved.
Bourke-Taylor, Helen; Cotter, Claire; Stephan, Rebecca
ABSTRACT Families raising a young child with multiple disabilities are charged with significant responsibilities such as learning about their child's condition and navigating mainstream and alternative services. Aim: Describe service choices, costs, out of pocket expenses, and the impact on families. Methods: Survey design using a custom questionnaire was used to collect extensive retrospective and current data. Purposive sampling (N = 29) occurred from one early intervention facility specialized in servicing children with cerebral palsy (CP) and, or multiple disabilities in Australia. Descriptive statistics were used for analysis of data. Results: Twenty-three (79%) families reported caring for a child with CP. Twenty-three families reported using at least one complementary/alternative intervention. Out-of-pocket amounts were reported including: chiropractic services (10 families); naturopathy (9 families); point percussion therapy (7 families), and Chinese medicine (6 families). Expenses resulted in families reporting forgoing clothing items, family entertainment, recreation/hobbies for parents (55%); family holidays (59%); time for parents alone (66%); and health services for parents (38%). Conclusions: Families of young children with multiple disabilities select a wide range of services for their child, with consequential out of pocket expenses. Early intervention professionals can be an important resource for families as they evaluate their choices and select interventions for their child.
Rocca, Maria A; Comi, Giancarlo; Filippi, Massimo
Multiple sclerosis (MS) is characterised by the accumulation of permanent neurological disability secondary to irreversible tissue loss (neurodegeneration) in the brain and spinal cord. MRI measures derived from T1-weighted image analysis (i.e., black holes and atrophy) are correlated with pathological measures of irreversible tissue loss. Quantifying the degree of neurodegeneration in vivo using MRI may offer a surrogate marker with which to predict disability progression and the effect of treatment. This review evaluates the literature examining the association between MRI measures of neurodegeneration derived from T1-weighted images and disability in MS patients. A systematic PubMed search was conducted in January 2017 to identify MRI studies in MS patients investigating the relationship between "black holes" and/or atrophy in the brain and spinal cord, and disability. Results were limited to human studies published in English in the previous 10 years. A large number of studies have evaluated the association between the previous MRI measures and disability. These vary considerably in terms of study design, duration of follow-up, size, and phenotype of the patient population. Most, although not all, have shown that there is a significant correlation between disability and black holes in the brain, as well as atrophy of the whole brain and grey matter. The results for brain white matter atrophy are less consistently positive, whereas studies evaluating spinal cord atrophy consistently showed a significant correlation with disability. Newer ways of measuring atrophy, thanks to the development of segmentation and voxel-wise methods, have allowed us to assess the involvement of strategic regions of the CNS (e.g., thalamus) and to map the regional distribution of damage. This has resulted in better correlations between MRI measures and disability and in the identification of the critical role played by some CNS structures for MS clinical manifestations. The
Full Text Available Pediatric-onset multiple sclerosis (POMS may represent a model of vulnerability to damage occurring during a period of active maturation of the human brain. Whereas adaptive mechanisms seem to take place in the POMS brain in the short-medium term, natural history studies have shown that these patients reach irreversible disability, despite slower progression, at a significantly younger age than adult-onset MS (AOMS patients. We tested for the first time whether significant brain alterations already occurred in POMS patients in their early adulthood and with no or minimal disability (n = 15 in comparison with age- and disability-matched AOMS patients (n = 14 and to normal controls (NC, n = 20. We used a multimodal MRI approach by modeling, using FSL, voxelwise measures of microstructural integrity of white matter tracts and gray matter volumes with those of intra- and internetwork functional connectivity (FC (analysis of variance, p ≤ 0.01, corrected for multiple comparisons across space. POMS patients showed, when compared with both NC and AOMS patients, altered measures of diffusion tensor imaging (reduced fractional anisotropy and/or increased diffusivities and higher probability of lesion occurrence in a clinically eloquent region for physical disability such as the posterior corona radiata. In addition, POMS patients showed, compared with the other two groups, reduced long-range FC, assessed from resting functional MRI, between default mode network and secondary visual network, whose interaction subserves important cognitive functions such as spatial attention and visual learning. Overall, this pattern of structural damage and brain connectivity disruption in early adult POMS patients with no or minimal clinical disability might explain their unfavorable clinical outcome in the long term.
Lima-Costa, Maria Fernanda; Mambrini, Juliana V M; Torres, Karen C L; Peixoto, Sérgio V; Andrade, Fabíola B; De Oliveira, Cesar; Tarazona-Santos, Eduardo; Teixeira-Carvalho, Andrea; Martins-Filho, Olindo A
The ability of inflammatory markers to predict disability in later life has received growing attention. However, the current evidence came predominantly from Caucasians and the role of genomic ancestry has not been investigated. We investigated the prognostic value of multiple citokynes and chemokines for incident disability in admixed older Brazilians and whether genomic African and Native American ancestry affects the association. Population-based longitudinal study. The Bambui-Epigen (Brazil) Cohort Study of Aging. 1171 males and females aged ≥60 years over 15-year of follow-up. Outcome examined was incident activity of daily living (ADL) disability assessed annually (10,039 measures were performed). Serum levels of citokynes (IL6, IL12, TNF, IL10, and IL1β) and chemokines (CCL2, CCL5, CXCL8, CXCL9 and CXCL10) were measured at baseline. We used 370,539 Single Nucleotide Polymorphisms (SNPs) to estimate each individual genomic ancestry proportions. Potential confounding variables included a wide range of socio-demographic variables and health indicators. Statistical analyses were based on competing risk framework. The incidence rate of disability was 57.9 per 1000 person-years. IL6 level at the highest quartile showed an independent association with ADL disability (SRH=1.32; 95% CI: 1.03, 1.70). Other inflammatory markers showed no statistically significant associations with the outcome. Neither genomic African nor Native American ancestry had an effect modifier on the associations (P for interaction >0.05 for all). Among multi-inflammatory markers, only IL6 had the potential to identify people at increased risk of ADL disability, independently of ethno-racial background. Copyright © 2017. Published by Elsevier B.V.
Hengeveld, B.; Voort, R.; Hummels, C.; De Moor, J.; Van Balkom, H.; Overbeeke, K.; Van der Helm, A.
Young children with multiple disabilities (e.g., both cognitive and motor disabilities) are confronted with severe limitations in language development from birth and later on. Stimulating the adult-child communication can decrease these limitations. Within LinguaBytes, a three-year research program,
Varsamis, Panagiotis; Agaliotis, Ioannis
The present study explored physical self-concept, goal orientation in sport, and self-regulation in regard to a motor task, in 75 secondary students with physical, intellectual, and multiple disabilities, who were educated in the same special education units. It was found that students with intellectual disabilities generally presented a positive…
A F Nunes
Full Text Available Context: Contrast sensitivity (CS function is one of the most important tests available for evaluating visual impairment. Multiple sclerosis (MS can produce highly selective losses in visual function and psychophysical studies have demonstrated CS deficits for some spatial frequencies. Aims: This work studies the differences in CS between a group of controls and a group of MS patients, focusing on the location of the maximum sensitivity peak, shape of the curve, and determination of the most affected spatial frequencies. Materials and Methods: Using a sinusoidal stimulus the authors assessed CS function in 28 subjects with definitive relapsing remitting MS, and in 50 controls with acuities of 20/25 or better. The peaks of the CS curves were studied by fitting third degree polynomials to individual sets of data. Results: Compared with the control group, the CS function curve for MS subjects showed more deficits in extreme points (low- and high-spatial frequencies. Our results display significant CS losses, at the high-frequencies band level, in the beginning of the disease. When the disease progresses and the disabilities appear, there are greater losses at the low-frequencies band level. In average, the CS curve peaks for the MS group were shifted in relation to the control group. Conclusions: CS losses in the MS group suggest an association with ageing and disability level in the expanded disability status scale. The position of the CS function peak is influenced by MS, age, and degree of disability.
National Aeronautics and Space Administration — The system proposed in this effort will allow the handicapped individual with hand/arm motor impairment to use the computer and access digital libraries on the...
Lancioni, G; O'Reilly, M; Singh, N; Sigafoos, J; Oliva, D; Smaldone, A; La Martire, M; Navarro, J; Spica, A; Chirico, M
To evaluate technology-assisted programs to help a man with pervasive motor disabilities and an adolescent with multiple disabilities manage the use of a radio and a special messaging system, respectively. The technology for the man (Study I) involved a modified radio device, an electronic control unit, an amplified MP3 player with verbal questions about radio operations (changes), and an optic microswitch. This allowed the man to respond to the questions and carry out operations through minimal chin movement. The technology for the adolescent (Study II) involved a net-book computer fitted with specifically designed software, a global system for mobile communication (GSM) modem, and an optic microswitch. This allowed the adolescent to select the persons to whom he wanted to send messages and the messages to send them, and to listen to messages sent to him. The data showed that both programs were effective, with the two participants learning to use the radio and the messaging system, respectively. Technology-assisted programs may represent useful tools for providing persons with pervasive and multiple disabilities leisure and communication opportunities.
Sastre-Garriga, J; Ingle, G T; Chard, D T; Ramió-Torrentà, Lí; McLean, M A; Miller, D H; Thompson, A J
Abnormalities in normal-appearing brain tissues may contribute to disability in primary progressive multiple sclerosis (PPMS), where few lesions are seen on conventional imaging. To evaluate the mechanisms underlying disease progression in the early phase of PPMS by measuring metabolite concentrations in normal-appearing white matter (NAWM) and cortical gray matter (CGM) and to assess their relationship with clinical outcomes. Case-control study. Tertiary referral hospital. Patients Forty-three consecutive patients within 5 years of onset of PPMS and 44 healthy control subjects. Concentrations of choline-containing compounds, phosphocreatine, myo-inositol, total N-acetyl-aspartate (tNAA), and glutamate-glutamine were estimated using proton magnetic resonance spectroscopic imaging. Brain parenchymal, white matter and gray matter fractions and proton density and gadolinium-enhancing lesion loads were calculated. The Expanded Disability Status Scale and Multiple Sclerosis Functional Composite scores were recorded. In CGM, concentrations of the tNAA (Pchanges, which differ in CGM and NAWM, occur in early PPMS and are linked with disability.
Morris, Robin D; Lovett, Maureen W; Wolf, Maryanne; Sevcik, Rose A; Steinbach, Karen A; Frijters, Jan C; Shapiro, Marla B
Results from a controlled evaluation of remedial reading interventions are reported: 279 young disabled readers were randomly assigned to a program according to a 2 × 2 × 2 factorial design (IQ, socioeconomic status [SES], and race). The effectiveness of two multiple-component intervention programs for children with reading disabilities (PHAB + RAVE-O; PHAB + WIST) was evaluated against alternate (CSS, MATH) and phonological control programs. Interventions were taught an hour daily for 70 days on a 1:4 ratio at three different sites. Multiple-component programs showed significant improvements relative to control programs on all basic reading skills after 70 hours and at 1-year follow-up. Equivalent gains were observed for different racial, SES, and IQ groups. These factors did not systematically interact with program. Differential outcomes for word identification, fluency, comprehension, and vocabulary were found between the multidimensional programs, although equivalent long-term outcomes and equal continued growth confirmed that different pathways exist to effective reading remediation. © Hammill Institute on Disabilities 2012.
Benedict, Ralph H B; Wahlig, Elizabeth; Bakshi, Rohit; Fishman, Inna; Munschauer, Frederick; Zivadinov, Robert; Weinstock-Guttman, Bianca
Health-related quality of life (HQOL) is poor in multiple sclerosis (MS) but the clinical precipitants of the problem are not well understood. Previous correlative studies demonstrated relationships between various clinical parameters and diminished HQOL in MS. Unfortunately, these studies failed to account for multiple predictors in the same analysis. We endeavored to determine what clinical parameters account for most variance in predicting HQOL, and employability, while accounting for disease course, physical disability, fatigue, cognition, mood disorder, personality, and behavior disorder. In 120 MS patients, we measured HQOL (MS Quality of Life-54) and vocational status (employed vs. disabled) and then conducted detailed clinical testing. Data were analyzed by linear and logistic regression methods. MS patients reported lower HQOL (pdisabled (45% of patients vs. 0 controls). Physical HQOL was predicted by fatigue, depression, and physical disability. Mental HQOL was associated with only depression and fatigue. In contrast, vocational status was predicted by three cognitive tests, conscientiousness, and disease duration (p<0.05). Thus, for the first time, we predicted HQOL in MS while accounting for measures from these many clinical domains. We conclude that self-report HQOL indices are most strongly predicted by measures of depression, whereas vocational status is predicted primarily by objective measures of cognitive function. The findings highlight core clinical problems that merit early identification and further research regarding the development of effective treatment.
Gagliardi, Lucia; Nataren, Nathalie; Feng, Jinghua; Schreiber, Andreas W; Hahn, Christopher N; Conwell, Louise S; Coman, David; Scott, Hamish S
The Allan-Herndon-Dudley syndrome is caused by mutations in the thyroid hormone transporter, Monocarboxylate transporter 8 (MCT8). It is characterized by profound intellectual disability and abnormal thyroid function. We report on a patient with Allan-Herndon-Dudley syndrome (AHDS) with profound sensorineural hearing loss which is not usually a feature of AHDS and which may have been due to a coexisting nonsense mutation in Microphthalmia-associated transcription factor (MITF). © 2015 Wiley Periodicals, Inc.
Zaal-Schuller, I. H.; Willems, D. I.; Ewals, F.; van Goudoever, J. B.; de Vos, M. A.
In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Perilli, Viviana; Campodonico, Francesca; Marchiani, Paola; Lang, Russell
Technology-aided programs have been reported to help persons with disabilities develop adaptive responding and control problem behavior/posture. This study assessed one such program in which choice of stimulus events was used as adaptive responding for three adults with multiple disabilities. A computer system presented the participants stimulus samples. For each sample, they could perform a choice response (gaining access to the related stimulus whose length they could extend) or abstain from responding (making the system proceed to the next sample). Once choice responding had strengthened, the program also targeted the participants' problem posture (i.e., head and trunk forward bending). The stimulus exposure gained with a choice response was interrupted if the problem posture occurred. All three participants successfully (a) managed choice responses and access to preferred stimuli and (b) gained postural control (i.e., reducing the problem posture to very low levels). The practical implications of those results are discussed. © The Author(s) 2015.
Wu, Xingchen; Hanson, Lars G.; Skimminge, Arnold Jesper Møller
Objective: To evaluate the prognostic value of the cortical N-acetyl aspartate to creatine ratio (NAA/Cr) in early relapsing-remitting multiple sclerosis (RRMS). Methods: Sixteen patients with newly diagnosed RRMS were studied by serial MRI and MR spectroscopic imaging (MRSI) once every 6 months...... for 24 months. Clinical examinations, including the expanded disability status scale (EDSS), were performed at baseline, month 24, and at year 7. Results: Baseline cortical NAA/Cr correlated inversely with EDSS at month 24 (r = -0.61, P = 4 had a lower baseline cortical...... parenchymal fraction (BPF) correlated inversely with EDSS at month 24 (r = -0.61, P disability after 2 and 7 years and may be used as a predictor of long-term disease outcome....
Brian M. Sandroff
Full Text Available Background. The oxygen cost (O2 cost of walking is elevated in persons with MS, particularly as a function of increasing disability status. Objective. The current study examined symptomatic (i.e., fatigue, pain, anxiety, and depression and gait (i.e., velocity, cadence, and step length variables that might explain why disability status is associated with O2 cost of walking in persons with MS. Materials and Methods. 82 participants completed the Patient-Determined Disease Steps, Fatigue Severity Scale, McGill Pain Questionnaire, and Hospital Anxiety and Depression Scale and undertook 2 trials of walking on a GAITRite electronic walkway. Participants then completed a six-minute walk test with concurrent assessment of expired gases for quantifying oxygen consumption and O2 cost of walking. Results. Disability (r=0.55 as well as fatigue (r=0.22, gait velocity (r=-0.62, cadence (r=-0.73, and step length (r=-0.53 were associated with the O2 cost of walking. Cadence (β=-0.67, but not step length (β=-0.14 or fatigue (β=-0.10, explained the association between disability and the O2 cost of walking. Conclusions. These results highlight cadence as a target of rehabilitation for increasing metabolic efficiency during walking among those with MS, particularly as a function of worsening disability.
Schamess, Andrew; Foraker, Randi; Kretovics, Matthew; Barnes, Kelli; Beatty, Stuart; Bose-Brill, Seuli; Tayal, Neeraj
Persons with multiple chronic conditions and disability face access barriers to office-based primary care and have very high rates of emergency department (ED) use and hospital admissions. Home-based primary care (HBPC) has been proposed as a way to improve disease management and prevent health crises. Enrollment of patients with disability and multiple chronic conditions in a HBPC program is associated with a subsequent decrease in ED visits and hospital admissions. We abstracted electronic medical record (EMR) data among patients receiving HBPC and compared rates per 1000 patient days for ED visits, admissions, 30-day readmissions, and inpatient days for up to three years before and after enrollment. Of 250 patients receiving HBPC, 153 had admission data recorded in our EMR prior to enrollment. One year after HBPC enrollment, the rate of admissions dropped by 5.2 (95% confidence interval 4.3, 6.0), 30-day readmissions by 1.8 (1.3, 2.2) and inpatient days by 54.6 (52.3, 56.9) per 1000 patient-days. Three years post-enrollment, rates remained below baseline by 2.2 (1.3, 3.1) for admissions, 0.5 (0.04, 1.0) for 30-day readmissions and 32.2 (29.8, 34.7) for inpatient days. Among 91 patients with pre-enrollment ED data, the rate of ED visits also dropped at one and three years by 5.5 (4.6, 6.4) and 2.7 (1.7, 3.7), respectively. Provision of HBPC for persons with multiple chronic conditions and disability is associated with a persistent reduction in ED and hospital use. Copyright © 2016 Elsevier Inc. All rights reserved.
Steenbergen, Henderika Annegien; Van der Schans, Cees P.; Van Wijck, Ruud; De Jong, Johan; Waninge, Aly
Background: Health care organizations supporting individuals with intellectual disabilities (IDs) carry out a range of interventions to support and improve a healthy lifestyle. However, it is difficult to implement an active and healthy lifestyle into daily support. The presence of numerous
Root, Jenny R.; Knight, Victoria F.; Mims, Pamela J.
Instruction in academic core content provides students with moderate to severe disabilities a full educational opportunity that promotes current and future options in the community and can complement acquisition of daily living skills. However, high school teachers face many challenges in balancing instructional priorities given the mission to…
Kempen, GIJM; Verbrugge, LM; Merrill, SS; Ormel, J
Introduction: we have tested the hypothesis that the co-occurrence of common impairments (motor and cognitive impairments, vision and hearing loss, depressive symptoms) of later life have exacerbating effects on disability [activities and instrumental activities of daily living, social and role
Hendriks, A.H.C.; Moor, J.M.H. de; Oud, J.H.L.; Franken, W.M.
Objective: To determine parents' service needs at the start of therapeutic toddler class treatment, to analyse determinants and to investigate received help after a period of 10 months. Subjects: Parents with motor or multiply disabled children in therapeutic toddler classes. Setting: Sixteen out of
Lancioni, G E; O'Reilly, M F; Singh, N N; Oliva, D; Piazzolla, G; Groeneweg, J
This study assessed the influence of favorite stimuli on indices of happiness, e.g., smiling or excited vocalizations, and aberrant behavior, e.g., cantilena-like vocalizations or hand waving, of two young adults with multiple disabilities during 5-min. treadmill sessions. Several favorite stimuli, e.g., music and vibratory events, were available for the participants. The stimuli were presented in a rotation fashion during the sessions. To control for the effects of the stimuli, treadmill sessions without stimuli were also conducted. Analysis showed that the treadmill sessions with stimuli led to higher indices of happiness and lower aberrant behavior for both participants, compared to the treadmill sessions without stimuli.
Adams, D; Rose, J; Jackson, N; Karakatsani, E; Oliver, C
It is well documented that mothers of children with intellectual disabilities experience elevated mental health difficulties and that these are exacerbated by the presence of challenging behaviour. However, comparatively little is known about the effect of specific coping strategies for managing such behaviours. This paper aims to document coping strategies used by mothers of children showing multiple forms of challenging behaviour and to explore how these relate to positive and negative maternal mental health. Eighty-nine mothers of children with intellectual disabilities completed questionnaires assessing maternal mental health (Hospital Anxiety and Depression Scale, Positive and Negative Affect Scale) and maternal coping strategies (Brief COPE). Coping strategies were not associated with child age or ability, but were associated with maternal mental health. Higher levels of problem- and positive-coping strategies were associated with higher positive affect. Although active-avoidance coping was the least frequently reported, it was associated with higher levels of negative affect and increased anxiety and depression. Moderated mediation analyses identified that active-avoidance coping mediated the relationship between the number of forms of challenging behaviour and poor maternal mental health, but only in mothers with lower levels of problem-focused coping. Active-avoidance coping is associated with poorer negative mental health in mothers of children with intellectual disabilities who have average to low levels of problem-focused coping. This is reflective of that noted within a range of populations, highlighting it as a key area for intervention.
Popescu, Veronica; Agosta, Federica; Hulst, Hanneke E
To determine whether brain atrophy and lesion volumes predict subsequent 10 year clinical evolution in multiple sclerosis (MS).......To determine whether brain atrophy and lesion volumes predict subsequent 10 year clinical evolution in multiple sclerosis (MS)....
Wynia, K.; Middel, B.; de Ruiter, H.; van Dijk, J.P.; Lok, W.S.; De Keyser, J.H.; Reijneveld, S.A.
Objective. The subjective dimension of disability, the perception of disability, is a dimension missing from the International Classification of Functioning, Disability and Health (ICF), and from health-related quality of life (HRQOL) instruments. However, it is a highly relevant dimension for
The main purpose of this study was to find out whether three students with multiple disabilities could increase their keyboard typing performance by poking the standard mouse scroll wheel with the newly developed Dynamic Typing Assistive Program (DTAP) and the built-in On-Screen Keyboard (OSK) computer software. The DTAP is a software solution that allows users to complete typing tasks with OSK software easily, quickly, and accurately by poking the mouse wheel. This study was performed according to a multiple baseline design across participants, and the experimental data showed that all of the participants significantly increased their typing efficiency in the intervention phase. Moreover, this improved performance was maintained during the maintenance phase. Practical and developmental implications of the findings were discussed. Copyright © 2014 Elsevier Ltd. All rights reserved.
Ok, Min Wook; Bryant, Diane Pedrotty
This study investigated the effects of explicit, strategic intervention with iPad application practice on the multiplication fact performance and strategy use of elementary students with learning disabilities (LD) using a single-case, multiple probe design across participants. Four fifth-grade students with LD received 15 1:1 intervention sessions…
Bailey, Rita L.; Angell, Maureen E.
This study employed a multiple probe design to evaluate the effectiveness of a school-based lunchtime oral-sensory/oral-motor/positive reinforcement program on food acceptance behaviors of three youth with multiple disabilities. Overall dramatic gains in food acceptance behaviors of all participants indicated that trained school personnel were…
This study evaluated whether two people with multiple disabilities and minimal motor behavior would be able to improve their Drag-and-Drop (DnD) performance using their finger/thumb poke ability with a mouse scroll wheel through a Dynamic Drag-and-Drop Assistive Program (DDnDAP). A multiple probe design across participants was used in this study…
Holmqvist, Eva; Thunberg, Gunilla; Peny Dahlstrand, Marie
The aim of this study was to explore parents' and professionals' thoughts of how a gaze-controlled computer can be beneficial to children with severe multiple disabilities. All systems were provided primarily for symbol-based communication, but were also used for other purposes such as play, leisure and school activities. A further aim was to investigate factors affecting usability, specifically for communication. The study used a qualitative approach, involving content analysis of semistructured interviews with the children's key persons (N = 11). The analysis yielded three categories and twelve subcategories. There were gains for the children in terms of empowerment, social interaction, learning opportunities and efficient computer use. Inaccessibility, liability issues and technical failure were seen as obstacles, while the prerequisites included time, collaboration, stimulating content, know-how and opportunities. To sum up, this study suggests that gaze-controlled technology can provide children who have multiple disabilities involving severe motor dysfunction and communicative and cognitive problems with new opportunities to communicate, interact and perform activities independently, as long as conditions are right.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Oliva, Doretta; Campodonico, Francesca
This study assessed the use of microswitch-aided programs to help three non-ambulatory adults with multiple disabilities exercise foot-leg responses. Those responses served to activate a largely neglected part of the participants' body, with possibly positive physical implications (e.g., for blood circulation, swelling, and muscle strength). Intervention focused on the left and right foot-leg response, separately. Eventually, sessions with one response were alternated with sessions with the other response. Responses were monitored via microswitches and followed by 8s of preferred stimulation (e.g., music and vibrotactile stimulation), which was automatically delivered. The results showed that all three participants had high levels of foot-leg responses during the intervention phases and a 3-week post-intervention check. The participants also displayed expressions of positive involvement during those study periods (i.e., engaged in behaviors, such as music-related head movements, smiles, or touching the vibratory devices) that could be interpreted as forms of interest/pleasure and happiness. These results are in line with previous findings in this area and can be taken as an important confirmation of the strength and dependability of the approach in motivating non-ambulatory persons with multiple disabilities to engage in foot-leg movements. The practical implications of these findings are discussed. Copyright © 2013 Elsevier Ltd. All rights reserved.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Boccasini, Adele; Oliva, Doretta; Buono, Serafino
Assessing two technology-based programs for reducing toe walking and breaks during walking of two men with multiple disabilities, respectively. The men were involved in separate single-case studies, each of which was carried out according to an ABAB design. The technology included a microprocessor with specific software, optic sensors, and visual plus vibrotactile or auditory systems for presenting preferred stimuli. In Study I, the man received 1 s of preferred flickering lights and vibratory input for each step performed with the heel of the left foot touching the ground or coming close to it (i.e. within a 2-mm distance). In Study II, the other man received 10 s of preferred music anytime he crossed one of the small marks present along the travel routes. The B phases showed that (a) the man included in Study I increased the percentages of left- and right-foot steps performed with the heels touching or nearing the ground to above 85% and 70%, respectively, and (b) the man included in Study II walked with very few breaks. Technology-based programs can be highly effective in helping persons with multiple disabilities improve their walking behavior.
Spiroergometric and spirometric parameters in patients with multiple sclerosis: are there any links between these parameters and fatigue, depression, neurological impairment, disability, handicap and quality of life in multiple sclerosis?
Rasova, K; Brandejsky, P; Havrdova, E; Zalisova, M; Rexova, P
One-hundred and twelve patients with multiple sclerosis were selected as population-based sample and examined on impairment (Expanded Disability Status Scale), disability (Barthel Index), handicap (Environment Status Scale), the quality of life (Multiple Sclerosis Quality of Life), fatigue (Modified Fatigue Impact Scale), depression (Beck Depression Inventory Score), respiratory function (spirometric parameters on spirometry) and physical fitness (spiroergometric parameters on a bicycle ergometer). The aim of the study was to examine and analyse (descriptive statistics) spiroergometric and spirometric parameters in patients with multiple sclerosis. Firstly, we tested the hypothesis whether spiroergometric and spirometric parameters are decreased and whether there are any correlations between these parameters and measures of impairment, depression, disability, handicap and quality of life. Secondly, we tested the hypothesis whether there is any correlation between a possible deconditioning and fatigue, and between a possible respiratory dysfunction and fatigue in multiple sclerosis. It results from this study that many spiroergometric parameters in patients with multiple sclerosis are significantly lowered in comparison to the population norm. A link can be found between some spiroergometric parameters and neurological impairment, disability, handicap and quality of life. It is not possible to prove any correlation between spiroergometric parameters and depression. From the spirometric parameters, these are expiratory flows that are significantly lowered in MS patients. It is not possible to prove any correlation between spirometric parameters and fatigue, depression, neurological impairment, duration of the disease, disability, handicap and quality of life in multiple sclerosis.
Fox, Robert A.; Burke, Amie M.; Fung, Michael P.
We studied the effectiveness of an individually-tailored leisure program implemented by direct care staff in a residential program for 28 adults with severe to profound intellectual disability using a multiple baseline design across two homes over a 1.5 year baseline and treatment period followed by another nearly 1.5 year maintenance phase. The…
Kantarci, O; Siva, A; Eraksoy, M; Karabudak, R; Sütlaş, N; Ağaoğlu, J; Turan, F; Ozmenoğlu, M; Toğrul, E; Demirkiran, M
To examine the natural history, survival, and prognostic factors in a sample of Turkish MS patients. This multicenter study included 1,259 definite MS patients diagnosed according to the criteria of Poser et al. Actuarial analysis of selected disability levels of 3, 6, 8, and 10 achieved with the Expanded Disability Status Scale (EDSS); a multivariate Cox regression analysis for prognostic factors related to time to reach EDSS > or = 6; and Pearson's correlation coefficient for individual factors were performed. The survival (+/- SE) at 15 years from onset was 94.6 +/- 2.9%, and at 25 years was 89.0 +/- 5.8%. The disability reached by 15 years was EDSS > or = 3 in 66.4%, EDSS > or = 6 in 41.2%, EDSS > or = 8 in 10.5%, and EDSS = 10 in 5.4%. The most significant unfavorable prognostic factors were progressive course (relative risk [RR], 3.73; CI, 2.71 to 5.13) and sphincter symptoms at onset (RR, 1.86; CI, 1.23 to 2.82), followed by male sex, motor symptoms at onset, and a high attack frequency within the first 5 years. Primary progressive disease was correlated positively with male sex (r = 0.0895, p = 0.001), older age (r = 0.1807, p = 0.000), and motor (r = 0.1433, p = 0.000) or sphincter symptoms (r = 0.1001, p = 0.000) at onset, unlike relapsing-remitting and secondary progressive disease. Although a slightly better prognosis is observed in the Turkish MS population, early prognostic factors are similar to most of the previous Western series. Primary progressive disease, mostly seen in older men with motor and sphincter involvement at onset, has a worse prognosis and may represent a distinct behavioral variant of MS.
Ricketts, Chris; Brice, Julie; Coombes, Lee
The purpose of multiple choice tests of medical knowledge is to estimate as accurately as possible a candidate's level of knowledge. However, concern is sometimes expressed that multiple choice tests may also discriminate in undesirable and irrelevant ways, such as between minority ethnic groups or by sex of candidates. There is little literature…
Nicholas B Norgard
Full Text Available Nicholas B Norgard, Brian T BadgleyUniversity at Buffalo, School of Pharmacy and Pharmaceutical Sciences, Buffalo, NY, USAAbstract: Eptifibatide is a glycoprotein IIb/IIIa receptor antagonist used to reduce the incidence of ischemic events in patients with acute coronary syndromes and those undergoing percutaneous coronary intervention. A minority of patients given eptifibatide develop acute, profound thrombocytopenia (<20,000 cells/mm3 within a few hours of receiving the drug. This case report discusses a patient who developed profound thrombocytopenia within hours of receiving eptifibatide for the first time. The Naranjo algorithm classified the likelihood that this patient’s thrombocytopenia was related to eptifibatide as probable. Profound thrombocytopenia is an uncommon but clinically important complication of eptifibatide. This case report emphasizes the importance of monitoring platelet counts routinely at baseline and within 2–6 hours of eptifibatide administration.Keywords: drug-induced thrombocytopenia, glycoprotein IIb/IIIa antagonists, eptifibatide, thrombocytopenia
Sharma, Anu; Glick, Hannah; Campbell, Julia; Biever, Allison
First, we review the development and plasticity of the central auditory pathways in infants and children with hearing loss who are fitted with cochlear implants (CIs). Second, we describe case studies demonstrating the clinical utility of the P1 central auditory evoked potential (CAEP) for evaluating cortical auditory maturation in the rapidly increasing number of cochlear-implanted children who have multiple disabilities. Children who receive CIs provide a platform to examine the trajectories of deprivation-induced and experience-dependent plasticity in the central auditory system. We review the evidence for, and time limits of sensitive periods for cortical auditory maturation framing an optimal period for cochlear implantation. Finally, we evaluate the use of the P1 biomarker as an objective assessment tool in the special case of children with multiple disabilities. The P1 response was useful in assessing central auditory maturation in patients with CHARGE association, ANSD, and Pallister-Killian Syndrome concomitant with hearing loss. The presence of co-existing disabilities in addition to hearing loss poses unique challenges regarding both pre-intervention evaluation and post-intervention rehabilitation for children with multiple disabilities. When combined with a standard audiological test battery, the P1 CAEP biomarker has a useful role in objectively evaluating the maturation of central auditory pathways to determine the effectiveness of various intervention strategies in hearing-impaired children with multiple disabilities.
Norgard, Nicholas B; Badgley, Brian T
Eptifibatide is a glycoprotein IIb/IIIa receptor antagonist used to reduce the incidence of ischemic events in patients with acute coronary syndromes and those undergoing percutaneous coronary intervention. A minority of patients given eptifibatide develop acute, profound thrombocytopenia (eptifibatide for the first time. The Naranjo algorithm classified the likelihood that this patient's thrombocytopenia was related to eptifibatide as probable. Profound thrombocytopenia is an uncommon but clinically important complication of eptifibatide. This case report emphasizes the importance of monitoring platelet counts routinely at baseline and within 2-6 hours of eptifibatide administration.
Stasolla, Fabrizio; Caffò, Alessandro O; Perilli, Viviana; Boccasini, Adele; Stella, Anna; Damiani, Rita; Albano, Vincenza; Damato, Concetta
We assessed the use of a microswitch-based program for promoting ambulation responses by two children with multiple disabilities. The goals of the study were to: (a) evaluate the importance of the contingency between the target behavior (forward step) and the programmed consequence (preferred stimuli), (b) measure effects of the intervention on indices of happiness, and (c) assess the social validation of the procedure using 20 physiotherapists as external raters. The intervention involved the automatic delivery of preferred stimuli contingent on forward steps. Results showed that both participants improved their performance (forward steps and indices of happiness) during contingent reinforcement phases compared to baseline and noncontingent reinforcement phases. Moreover, physiotherapists rated the intervention as socially valid. © 2017 Society for the Experimental Analysis of Behavior.
Schewtschik, Ana Carolina; de Oliveira, Evandro Santiago; de Vasconcelos Moreira, Izaura; Ribas, Cristiane Gonçalves; Cunha Loureiro, Ana Paula
Cerebral palsy (CP) may involve muscle imbalance between the spastic muscles and their antagonists leading to weak postural changes, decreased mobility and chest deformities. To improve postural condition in children with CP using physiotherapy and assistive technology (AT). Five children with CP and multiple disabilities and postural changes like scoliosis were included in this study. AT involved the use of low-cost custom made cushion seat and backrest for the wheelchairs to achieve 90° of trunk flexion. This was performed in 10 sessions after the beginning of physiotherapy. As evaluation-intervention tool, photographs were taken at the beginning and end of each session, and then analyzed using software for postural assessment (SAPO). Twenty-five per cent of the participants had an improvement of trunk angulations at the end of the treatment program. The use of AT with physiotherapy treatment proved efficient in the postural alignment of children with CP children in a wheelchair. Wheelchairs are manufactured in standard size, which makes difficult the adaptation of individuals with peculiar postures. Even the most sophisticated, with adjustments and special accessories, not always allow adjustments to shape up properly to deformities in children with cerebral palsy. It is hoped that this research will be useful in order to show rehabilitation professionals the ability to minimize the difficulties of keeping children with cerebral palsy and multiple disabilities properly seated in the wheelchair, facilitating posture, movement, breathing and swallowing. The construction of these artifacts has the advantage of being low cost, and must pass through stages of adequacy and modeling in order to replace the seat and side of the wheelchair.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Ricciuti, Riccardo A; Trignani, Roberto; Oliva, Doretta; Signorino, Mario; D'Amico, Fiora; Sasanelli, Giovanni
These two studies extended technology-aided programs to promote leisure and communication opportunities to a man with cervical spinal cord injury and a post-coma man with multiple disabilities. The studies involved the use of ABAB designs, in which A and B represented baseline and intervention phases, respectively. The programs focused on enabling the participants to activate songs, videos, requests, text messages, and telephone calls. These options were presented on a computer screen and activated through a small pressure microswitch by the man with spinal cord injury and a special touch screen by the post-coma man. To help the latter participant, who had no verbal skills, with requests and telephone calls, series of words and phrases were made available that he could activate in those situations. Data showed that both participants were successful in managing the programs arranged for them. The man with spinal cord injury activated mean frequencies of above five options per 10-min session. The post-coma man activated mean frequencies of about 12 options per 20-min session. Technology-aided programs for promoting leisure and communication opportunities might be successfully tailored to persons with spinal cord injury and persons with post-coma multiple disabilities. Implications for Rehabilitation Technology-aided programs may be critical to enable persons with pervasive motor impairment to engage in leisure activities and communication events independently. Persons with spinal cord injury, post-coma extended brain damage, and forms of neurodegenerative disease, such as amyotrophic lateral sclerosis, may benefit from those programs. The programs could be adapted to the participants' characteristics, both in terms of technology and contents, so as to improve their overall impact on the participants' functioning and general mood.
Faivre, Anthony; Robinet, Emmanuelle; Guye, Maxime; Rousseau, Celia; Maarouf, Adil; Le Troter, Arnaud; Zaaraoui, Wafaa; Rico, Audrey; Crespy, Lydie; Soulier, Elisabeth; Confort-Gouny, Sylviane; Pelletier, Jean; Achard, Sophie; Ranjeva, Jean-Philippe; Audoin, Bertrand
The compensatory effect of brain functional connectivity enhancement in relapsing-remitting multiple sclerosis (RRMS) remains controversial. To characterize the relationships between brain functional connectivity changes and disability progression in RRMS. Long-range connectivity, short-range connectivity, and density of connections were assessed using graph theoretical analysis of resting-state functional magnetic resonance imaging (fMRI) data acquired in 38 RRMS patients (disease duration: 120 ± 32 months) and 24 controls. All subjects were explored at baseline and all patients and six controls 2 years later. At baseline, levels of long-range and short-range brain functional connectivity were higher in patients compared to controls. During the follow-up, decrease in connections' density was inversely correlated with disability progression. Post-hoc analysis evidenced differential evolution of brain functional connectivity metrics in patients according to their level of disability at baseline: while patients with lowest disability at baseline experienced an increase in all connectivity metrics during the follow-up, patients with higher disability at baseline showed a decrease in the connectivity metrics. In these patients, decrease in the connectivity metrics was associated with disability progression. The study provides two main findings: (1) brain functional connectivity enhancement decreases during the disease course after reaching a maximal level, and (2) decrease in brain functional connectivity enhancement participates in disability progression. © The Author(s), 2016.
Brownlee, WJ; Alves Da Mota, Patricia; Prados, Ferran
Background: 23Na-MRI is a novel approach to investigating neuroaxonal metabolic dysfunction and neuroaxonal loss in vivo in people with multiple sclerosis (MS). Objective: To investigate the relationship of tissue-specific total sodium concentration (TSC) with disease course and disability......-appearing white matter (NAWM), T1-isointense and T1-hypointense lesions was calculated. Physical disability was assessed using the Expanded Disability Status Scale (EDSS), timed 25-foot walk test (TWT) and 9-hole peg test (9HPT). Cognition was assessed using the paced auditory serial addition test (PASAT), symbol...... digit modalities test (SDMT) and tests of verbal and visual memory. Linear regression was used to compare differences in tissue TSC between groups. Multivariable linear regression was used to identify independent associations between TSC and disability with adjustment for age, sex, disease duration...
Berteletti, Ilaria; Prado, Jérôme; Booth, James R
Greater skill in solving single-digit multiplication problems requires a progressive shift from a reliance on numerical to verbal mechanisms over development. Children with mathematical learning disability (MD), however, are thought to suffer from a specific impairment in numerical mechanisms. Here we tested the hypothesis that this impairment might prevent MD children from transitioning toward verbal mechanisms when solving single-digit multiplication problems. Brain activations during multiplication problems were compared in MD and typically developing (TD) children (3rd to 7th graders) in numerical and verbal regions which were individuated by independent localizer tasks. We used small (e.g., 2 × 3) and large (e.g., 7 × 9) problems as these problems likely differ in their reliance on verbal versus numerical mechanisms. Results indicate that MD children have reduced activations in both the verbal (i.e., left inferior frontal gyrus and left middle temporal to superior temporal gyri) and the numerical (i.e., right superior parietal lobule including intra-parietal sulcus) regions suggesting that both mechanisms are impaired. Moreover, the only reliable activation observed for MD children was in the numerical region when solving small problems. This suggests that MD children could effectively engage numerical mechanisms only for the easier problems. Conversely, TD children showed a modulation of activation with problem size in the verbal regions. This suggests that TD children were effectively engaging verbal mechanisms for the easier problems. Moreover, TD children with better language skills were more effective at engaging verbal mechanisms. In conclusion, results suggest that the numerical- and language-related processes involved in solving multiplication problems are impaired in MD children. Published by Elsevier Ltd.
Bosnak-Guclu, Meral; Gunduz, Arzu Guclu; Nazliel, Bijen; Irkec, Ceyla
To compare functional exercise capacity, pulmonary function and respiratory muscle strength in fully ambulatory patients with multiple sclerosis with different disability levels and healthy controls, and to elucidate the determinant factors of functional exercise capacity. Forty-three fully ambulatory patients with multiple sclerosis and 30 healthy controls were included in the study. Patients were grouped according to Expanded Disability Status Scale (EDSS); Group I (EDSS 0-2), Group II (EDSS 2.5-4.5). Functional exercise capacity was evaluated using a six-minute walk test, and measurement of pulmonary function, and maximal inspiratory and expiratory pressures (MIP, MEP). The Pulmonary Index was used as a clinical predictor of respiratory dysfunction. Respiratory muscle strength was lower in multiple sclerosis groups compared with controls, but the difference in MIP and %MIP did not reach statistical significance in Group I. The six-minute walk test distance was significantly shorter and peak expiratory flow was lower in multiple sclerosis groups (p difference in heart rate (R2 = 0.06, p = 0.007), age (R2 = 0.05, p = 0.009) and gender (R2 = 0.09, p = 0.003). Respiratory muscles are weakened, functional exercise capacity is reduced and pulmonary function is affected even in the early phase of multiple sclerosis. Ambulatory patients with multiple sclerosis who have a higher level of disability have lower pulmonary function, respiratory muscle strength and functional capacity than less disabled ones and controls. Neurological disability level, age, gender and heart rate difference on exertion are the determinants of functional exercise capacity.
Jones, E; Pike, J; Marshall, T; Ye, X
Multiple sclerosis (MS) is a chronic progressive condition affecting the central nervous system. Progression of MS results in increased level of disability and most patients will eventually experience some degree of functional impairment and impaired mobility. Costs and burdens escalate as MS disability increases. However, there is a lack of recent data on the impact of MS disability on the cost and burden among patients in the US. Data for this study were drawn from a real world, cross-sectional survey undertaken between 2013 and 2014. Neurologists completed detailed patient report forms (PRF) for the most recent consulting patients with MS (age >18 years). Patient's perceptions of their diagnosis and health-related quality of life (HRQoL) were collected through a patient self-completion questionnaire (PSC). Regression analysis was used to evaluate the relationship between disability (determined by latest Expanded Disability Status Scale [EDSS] score) and current relapse and health care resource utilization, health care costs, HRQoL and work productivity. PRF data were collected for 715 patients (335 also completed a PSC). Patients with higher disability scores (EDSS 3-5 and >5 vs care related costs, including costs for physician consultations, hospitalizations and therapy (p care were $51,825, $57,889 and $67,116 for EDSS 5 groups, respectively; $51,692 and $58,648 for non-relapse and relapse groups, respectively. For MS patients in the US, health resource utilization and healthcare care costs increase with progression of disability. As the disability worsens, patients also exhibit diminished HRQoL and lower work productivity. There is a need for treatments that slow down or delay disability progression among MS patients.
Blackbourn, J M; Campbell, J
A multiple baseline, single-subject design was employed in the analysis of the academic performance of a second grade girl labeled "learning disabled." Peer tutoring combined with praise led to a significant improvement in solving mathematics problems requiring regrouping, word recognition, and ability to locate specific text pages.
Eye movement desensitisation and reprocessing therapy for posttraumatic stress disorder in a child and an adolescent with mild to borderline intellectual disability: A multiple baseline across subjects study
Mevissen, E.H.M.; Didden, H.C.M.; Korzilius, H.P.L.M.; Jongh, A. de
BACKGROUND: This study explored the effectiveness of eye movement desensitisation and reprocessing (EMDR) therapy for post-traumatic stress disorder (PTSD) in persons with mild to borderline intellectual disability (MBID) using a multiple baseline across subjects design. METHODS: One child and one
Jongen, Peter Joseph; Heerings, Marco; Ruimschotel, Rob; Hussaarts, Astrid; Evers, Silvia; Duyverman, Lotte; Valkenburg-Vissers, Joyce; Cornelissen, Job; Bos, Michel; van Droffelaar, Maarten; Lemmens, Wim A.; Donders, Rogier; van der Zande, Anneke; Visser, Leo H.
Background: In people with multiple sclerosis (MS) disabilities and limitations may negatively affect self-efficacy. Lowered self-efficacy has been associated with decreases in health-related quality of life, physical activity and cognitive performance. In an explorative observational study we found
Jongen, P.J.; Heerings, M.; Ruimschotel, R.; Hussaarts, A.; Evers, S.; Duyverman, L.; Valkenburg-Vissers, J.; Cornelissen, J.; Bos, M.; Droffelaar, M. van; Lemmens, W.A.J.G.; Donders, R.; Zande, A. van der; Visser, L.H.
BACKGROUND: In people with multiple sclerosis (MS) disabilities and limitations may negatively affect self-efficacy. Lowered self-efficacy has been associated with decreases in health-related quality of life, physical activity and cognitive performance. In an explorative observational study we found
Lancioni, G.E.; Singh, N.N.; O'Reilly, M.F.; Sigafoos, J.; Oliva, D.; Campodonico, F.; D'Amico, F.; Buonocunto, F.; Sacco, V.; Didden, H.C.M.
Post-coma individuals emerging from a minimally conscious state with multiple disabilities may enjoy contact with relevant partners (e.g., family members and friends), but may not have easy access to them. These two single-case studies assessed whether those individuals could make contact with
Eye Movement Desensitisation and Reprocessing Therapy for Posttraumatic Stress Disorder in a Child and an Adolescent with Mild to Borderline Intellectual Disability: A Multiple Baseline across Subjects Study
Mevissen, Liesbeth; Didden, Robert; Korzilius, Hubert; de Jongh, Ad
Background: This study explored the effectiveness of eye movement desensitisation and reprocessing (EMDR) therapy for post-traumatic stress disorder (PTSD) in persons with mild to borderline intellectual disability (MBID) using a multiple baseline across subjects design. Methods: One child and one adolescent with MBID, who met diagnostic criteria…
Gomaa, Omema Mostafa Kamel
This study investigated the effect of using differentiated instruction using multiple intelligences on achievement in and attitudes towards science in middle school students with learning disabilities. A total of 61 students identified with LD participated. The sample was randomly divided into two groups; experimental (n= 31 boys )and control (n=…
Eissa, Mourad Ali; Mostafa, Amaal Ahmed
This study investigated the effect of using differentiated instruction by integrating multiple intelligences and learning styles on solving problems, achievement in, and attitudes towards math in six graders with learning disabilities in cooperative groups. A total of 60 students identified with LD were invited to participate. The sample was…
Shih, Ching-Hsiang; Shih, Ching-Tien; Chiang, Ming-Shan
This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture) and a Wii Balance Board with a newly developed standing posture detection program (i.e. a new software program turns a Wii Balance Board into a precise standing posture detector). The…
A systematic review of literature was carried out on peer-reviewed journals published from 2000 to 2015 to help in determining the best strategy of evidence-based practice that can be applied in teaching literacy skills among students with multiple disabilities. A total of 12 studies were reviewed, some of which included science and mathematics…
Shih, Ching-Hsiang; Chang, Man-Ling; Shih, Ching-Tien
This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using limb swing with a gyration air mouse and a newly developed limb movement detection program (LMDP, i.e., a new software program that turns a gyration air mouse into a precise limb movement detector). The study was performed…
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Oliva, Doretta; Campodonico, Francesca; Lang, Russell
The present three single-case studies assessed the effectiveness of technology-based programs to help three persons with multiple disabilities exercise adaptive response schemes independently. The response schemes included (a) left and right head movements for a man who kept his head increasingly static on his wheelchair's headrest (Study I), (b)…
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Oliva, Doretta; D'Amico, Fiora
Persons with multiple disabilities, including pervasive motor impairment, may have problems controlling even small responses (e.g., vocal emissions, finger movements, or prolonged eyelid closures) within time-sensitive situations, such as those involved in choice programs. Recent research has indicated that smile expressions can be used as functional choice responses for some of these persons. The present two studies were aimed at assessing the smile response for a child with congenital multiple disabilities and a tongue response for a post-coma man who had recovered his consciousness but presented with pervasive multiple disabilities. The first of the two studies represented a research extension (i.e., a new case with a slightly adapted microswitch technology) concerning the smile response, which had recently been evaluated with few other cases. The second study represented a new effort to assess the tongue response within a choice program and for a post-coma man with multiple disabilities. The results showed that the participants used the smile and the tongue responses successfully while they were apparently unsuccessful in using a slight head/chin movement response. Their choice behavior focused reliably on preferred stimuli and avoided non-preferred stimuli. Implications of the results are discussed. Copyright © 2013 Elsevier Ltd. All rights reserved.
Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Buonocunto, Francesca; Sacco, Valentina; Navarro, Jorge; Lanzilotti, Crocifissa; De Tommaso, Marina; Megna, Marisa; Oliva, Doretta
This study assessed technology-aided programs for helping two post-coma persons, who had emerged from a minimally conscious state and were affected by multiple disabilities, to (a) engage with leisure stimuli and request caregiver's procedures, (b) send out and listen to text messages for communication with distant partners, and (c) combine…
Norgard, Nicholas; Badgley,Brian
Nicholas B Norgard, Brian T BadgleyUniversity at Buffalo, School of Pharmacy and Pharmaceutical Sciences, Buffalo, NY, USAAbstract: Eptifibatide is a glycoprotein IIb/IIIa receptor antagonist used to reduce the incidence of ischemic events in patients with acute coronary syndromes and those undergoing percutaneous coronary intervention. A minority of patients given eptifibatide develop acute, profound thrombocytopenia (<20,000 cells/mm3) within a few hours of receiving the drug. This c...
Glanz, Bonnie I; Dégano, Irene R; Rintell, David J; Chitnis, Tanuja; Weiner, Howard L; Healy, Brian C
To characterize work productivity in relapsing multiple sclerosis (MS) by using a work productivity scale and to identify associations between work productivity and disability, depression, fatigue, anxiety, cognition, and health-related quality of life. Three hundred seventy-seven subjects with a clinically isolated syndrome or relapsing remitting MS participated in the study. Subjects underwent neurological examinations and completed patient-reported outcome and cognitive measures. Subjects also completed the Work Productivity and Activity Impairment Questionnaire: General Health to quantify absenteeism (missing work because of health problems), presenteeism (impairment while working), overall work impairment, and daily activity impairment attributable to health problems. Univariate correlations and multivariate models were used to determine the associations between each work productivity variable and clinical, patient-reported outcome, and cognitive measures. Seventy-six percent of subjects were employed. Fourteen percent of working subjects reported absenteeism, and 47% reported presenteeism. The mean work time lost because of absenteeism was 4%, and the mean work time lost because of presenteeism was 12%. Absenteeism was not significantly associated with disease or patient-reported outcome measures. Statistically significant correlations (0.32-0.53) were found between presenteeism and increasing disability, fatigue, depression, anxiety, and reduced quality of life. No associations were observed between presenteeism and disease duration or cognitive function. Subjects with clinically isolated syndrome/relapsing remitting MS reported substantial work productivity losses due to presenteesim. Presenteeism was associated with increasing fatigue, depression, anxiety, and reduced quality of life. It is possible that the early identification and treatment of fatigue and mental health symptoms may improve productivity while working and extend employment for individuals
Kantorová, E; Poláček, H; Bittšanský, M; Baranovičová, E; Hnilicová, P; Čierny, D; Sivák, Š; Nosáľ, V; Zeleňák, K; Kurča, E
Disturbances in the hypothalamo-pituitary axis are supposed to modulate activity of multiple sclerosis (MS). We hypothesised that the extent of HYP damage may determine severity of MS and may be associated with the disease evolution. We suggested fatigue and depression may depend on the degree of damage of the area. 33 MS patients with relapsing-remitting and secondary progressive disease, and 24 age and sex-related healthy individuals (CON) underwent 1H-MR spectroscopy (1H-MRS) of the hypothalamus. Concentrations of glutamate + glutamin (Glx), cholin (Cho), myoinositol (mIns), N-acetyl aspartate (NAA) expressed as ratio with creatine (Cr) and NAA were correlated with markers of disease activity (RIO score), Multiple Sclerosis Severity Scale (MSSS), Depressive-Severity Status Scale and Simple Numerical Fatigue Scale. Cho/Cr and NAA/Cr ratios were decreased and Glx/NAA ratio increased in MS patients vs CON. Glx/NAA, Glx/Cr, and mIns/NAA were significantly higher in active (RIO 1-2) vs non-active MS patients (RIO 0). Glx/NAA and Glx/Cr correlated with MSSS and fatigue score, and Glx/Cr with depressive score of MS patients. In CON, relationships between Glx/Cr and age, and Glx/NAA and fatigue score were inverse. Our study provides the first evidence about significant hypothalamic alterations correlating with clinical outcomes of MS, using 1H-MRS. The combination of increased Glu or mIns with reduced NAA in HYP reflects whole-brain activity of MS. In addition, excess of Glu is linked to severe disease course, depressive mood and fatigue in MS patients, suggesting superiority of Glu over other metabolites in determining MS burden.
Fulcher, Anne Nivelles; Purcell, Alison; Baker, Elise; Munro, Natalie
Early identification of severe/profound childhood hearing loss (HL) gives these children access to hearing devices and early intervention to facilitate improved speech and language outcomes. Predicting which infants will go on to achieve such outcomes remains difficult. This study describes clinician identified malleable and non-malleable factors that may influence speech and language outcomes for children with severe/profound HL. Semi-structured interviews were conducted with six experienced auditory verbal clinicians. A collective case study design was implemented. The interviews were transcribed and coded into themes using constant comparative analysis. Clinicians identified that, for children with severe/profound HL, early identification, early amplification and commencing auditory-verbal intervention under 6 months of age may facilitate child progress. Possible barriers were living in rural/remote areas, the clinicians' lack of experience and confidence in providing intervention for infants under age 6-months and belonging to a family with a culturally and linguistically diverse (CALD) background. The results indicate that multiple factors need to be considered by clinicians working with children with HL and their families to determine how each child functions within their own environment and personal contexts, consistent with the International Classification of Functioning, Disability and Health (ICF) framework. Such an approach is likely to empower clinicians to carefully balance potential barriers to, and facilitators of, optimal speech and language outcomes for all children with HL.
Zeqiraj, Kamber; Kruja, Jera; Kabashi, Serbeze; Muçaj, Sefedin
Multiple Sclerosis (MS) is a chronic recurrent neurological disease that affects the Central Nervous System. This study aims to determine epidemiological factors that affect the appearance of MS, such as: incidence, prevalence, mortality, case appearance in accordance with the disease phase RRMS, SPMS, PPMS, gender, age, age group, and EDSS. Deals with analyzing diagnosed and treated patients in the Clinic of Neurology in Prishtina during the period of 2003-2012. The research was conducted through a questionnaire applied in the diagnosed cases of MS. Information on patients was gathered from: history of illness, discharge reports and other relevant documents on MS illness. Clinical and epidemiological-descriptive study methods were used. The acquired results are shown through tables, graphics. Statistical processing was conducted with Microsoft Office Excel. From the total number of doubtful hospitalized cases of demyelinization (644) in the Clinic of Neurology in Prishtina, 412 cases (64%) were diagnosed with MS. For the period of 2003-2012 the prevalence of MS has been 19.6 of patients in 100,000 inhabitants. MS incidence rate was 0.95 of patients in 100,000 inhabitants. MS mortality rate was 0.14 of deceased in 100,000 inhabitants. The ratio female--male is 2.3:1. A larger number of patients fall within the age group of 30-39 years-old. Clinical form trends: RRSM 72.3%, SPSM 22.6%, PPSM 5.1%. The rate of EDSS 78.3% (0-3.5), 14.9% (4-6.5), 6.8% (7-9).
Full Text Available Asystole in a non laparoscopic upper abdominal surgery following intense vagal stimulation is a rare event. This case report highlights the need for awareness of such a complication when a thoracic epidural anaesthetic has been given in addition to a general anaesthetic for an upper abdominal procedure. A combined thoracic epidural and general anaesthetic was given. The anterior abdominal wall was retracted forty minutes after administration of the epidural bolus. This maneuver resulted in a profound vagal response with bradycardia and asystole. The patient was resuscitated successfully with a cardiac massage, atropine and adrenaline and the surgery was resumed. Surgery lasted eleven hours and was uneventful.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Green, Vanessa; Oliva, Doretta; Buonocunto, Francesca; Sacco, Valentina; Biancardi, Emma M; Di Nuovo, Santo
To extend the assessment of technology-based programs for promoting stimulus choice and staff/caregiver calls or radio operation and text messaging. In Study I, the program involved a portable computer, commercial software, and a microswitch to allow a man with motor impairment and moderate intellectual disability to choose among preferred stimuli (e.g., songs and film clips) and persons to call. In Study II, the programs involved (a) a radio device and an electronic control unit or (b) a net-book computer and a global system for mobile communication. A woman with blindness and moderate intellectual disability used a microswitch to operate the radio or send and listen to text messages. The participants succeeded in using the technology-aided programs through simple microswitch activations involving partial hand closure (Study I) or hand pressure (Study II). Technology-based programs can provide persons with multiple disabilities relevant leisure and communication opportunities.
Papageorgiou, Dora; Andreou, Yiannoula; Soulis, Spyros
A basic need for a child is to belong to a group (Maslow, 1970). Groups help children: to develop relationships and to foster individual mental health (Johnson and Johnson, 1989); and disabled and non-disabled children, when given assistance, can develop relationships with each other (Sideris, 1998). But there are very few opportunities in Cyprus…
Bin Sawad, Aseel; Seoane-Vazquez, Enrique; Rodriguez-Monguio, Rosa; Turkistani, Fatema
This study compared the sensitivity of the Expanded Disability Status Scale (EDSS) and the Multiple Sclerosis Functional Composite (MSFC) as clinical endpoints in multiple sclerosis (MS) clinical trials. Medline (1946 through 12 September 2014) and Embase (1974 through 12 September 2014) databases searches were conducted using keywords and Medical Subject Heading (MeSH) terms related to MS, EDSS, and MSFC. Only studies that used the EDSS and MSFC as endpoints were assessed. All statistical analyses were conducted using comprehensive meta-analysis (CMA). The percentages of the overall changes in EDSS and MSFC were compared. The relative risks were calculated in randomized clinical trials (RCTs). A total of 123 studies were identified. There were nine studies (6 case series and 3 RCTs) included in the analysis. In the case series, the EDSS change rate in MS patients was 33.5% (95% CI: 12.9-63.2%) and the MSFC change rate was 30.3% (95% CI: 9.2-65.2%). In RCTs, patients who take the drug would be 22.9 times as likely as patients who did not take the drug to experience a change in the EDSS scale (RR = 22.9, 95% CI = 0.996-1.517, p = 0.055). Patients who take the drug would be 48.9 times as likely as patients who did not take the drug to experience a change in the MSFC scale (RR = 48.9, 95% CI = CI = 0.916-2.419, p = 0.108). This study focused only on MS patient improvement (positive changes) on the EDSS and MSFC. More studies are needed to include patient deterioration (negative changes) on EDSS and MSFC. There is controversy about the sensitivity of the EDSS and MSFC in detecting the progression of MS disease. The EDSS and MSFC are effective tools to assess the clinical severity and progression of MS disease. MSFC is more sensitive than EDSS in detecting the progression of MS disease.
Seong, Youjin; Wehmeyer, Michael L.; Palmer, Susan B.; Little, Todd D.
Promoting self-determination has been identified as an important practice for the successful transition of youth and young adults with disabilities, and numerous studies have examined the relationship between levels of self-determination and transition-related and postsecondary outcomes. Only a few such studies, however, have examined the global…
Khan, Omar; Seraji-Bozorgzad, Navid; Bao, Fen; Razmjou, Sara; Caon, Christina; Santiago, Carla; Latif, Zahid; Aronov, Rimma; Zak, Imad; Ashtamker, Natalia; Kolodny, Scott; Ford, Corey; Sidi, Yulia
Conventional MRI techniques do not necessarily provide information about multiple sclerosis (MS) disease pathology or progression. Nonconventional MRI techniques, including proton magnetic resonance spectroscopy (1 H-MRS), are increasingly used to improve the qualitative and quantitative specificity of MR images. This study explores potential correlations between MRI measures of disease and disability progression as measured by the Expanded Disability Status Scale (EDSS), Functional Systems (FS), and ambulation index scores in a unique cohort of MS patients treated with glatiramer acetate that has been closely monitored for over 20 years. This was a multicenter, open-label, cross-sectional MRI substudy among participants in the GA-9004 open-label extension of the 36-month, double-blind GA-9001 study, timed to coincide with the prospectively planned 20-year clinical exam. Of 64 patients who participated in the MRI substudy, results are presented for the 39 patients (61%) who had a 1 H-MRS assessment at 20 years of treatment. Both total N-acetylaspartate relative to total creatinine (tNAA/tCr) concentration ratio and T1 lesion volume were found to be robustly associated with disability levels with different statistical approaches. Gray matter (GM) volume was found to be a more consistent parameter than white matter (WM) volume for disability allocation. The elastic net algorithm showed a trade-off between WM and GM volumes for disability estimation when different disability definitions were used. Among patients with MS receiving long-term glatiramer acetate therapy, consistent effects on disability levels indicated by EDSS and pyramidal FS score thresholds were found for tNAA/tCr concentration ratio and T1 lesion volume. © 2016 The Authors. Journal of Neuroimaging published by Wiley Periodicals, Inc. on behalf of American Society of Neuroimaging.
Grassi, Lucia; Rossi, Stefano; Studer, Valeria; Vasco, Gessica; Motta, Caterina; Patanè, Fabrizio; Castelli, Enrico; Rossi, Silvia; Cappa, Paolo
Multiple Sclerosis (MS) is a widespread progressive neurologic disease with consequent impairments in daily activities. Disorders of balance are frequent and equilibrium tests are potentially useful to quantify disability and to verify treatment effectiveness. The fair sensitivity of the widely used not-perturbed tests to detect balance disturbances in MS patients have prompted the development of mechatronic systems capable to impose known equilibrium perturbations, in order to challenge the balance control and, consequently, to better assess the level of impairment. We sought to clarify whether the proposed perturbed-test is capable to discriminate healthy subjects from patients with MS, even in mild or in the absence of clinically evident balance disturbances. We assessed balance performances of 17 adults with MS and 13 age-matched healthy controls (HC) using both perturbed (PT) and not-perturbed (NPT) postural tests by means of a 3 Degree Of Freedom (DOF) rotational mechatronic platform. Participants stood barefoot on the platform in standing position and their center of pressure (CoP) was gathered by using a pressure matrix. Each trial lasted 30 s and was carried out with and without visual stimuli. Several postural indices were computed for each trial. Correlations between postural indices and clinical scales were analyzed. No significant differences were found between groups for all indices when subjects performed NPTs. Conversely, significant differences in postural indices between MS and HC emerged during PTs. Additionally, PTs revealed significant differences between patients without any cerebellar impairment (cerebellar EDSS subscore equal to 0) and HC. The discrimination capability of PTs was confirmed by the ROC analysis. No significant change of the selected metrics occurred in HC when NPTs were performed with eyes closed, while indices presented a significant worsening in MS subjects. Not-perturbed tests showed lower sensitivity than perturbed ones
Torabipour, Amin; Asl, Zahra Ahmadi; Majdinasab, Nastaran; Ghasemzadeh, Roya; Tabesh, Hamed; Arab, Mohammad
Multiple sclerosis is a common and chronic neurologic disorder. This disorder imposes physical, economic, and psychosocial burden on individuals, their families and society. This study aims to analyze the costs of multiple sclerosis disease based on the severity of disability. We performed a cross-sectional cost of illness study. This study was conducted in 332 patients of Khuzestan province of Iran. Data were included: Patient's characteristics, disability status, medical, and nonmedical costs and were gathered by using the questionnaire during 3 months period. Costs analysis was performed in the basis of expanded disability status scale (EDSS). Data were analyzed by using SPSS 18 software. Mean age of the patients was 33.5 (standard deviation [SD]: 9.1) and 70.5% of patients were female. Mean EDSS score of the patients was 2.2 (SD: 1.6). Most patients (92.1%) had relapsing remitting multiple sclerosis (MS) form of the disease. Costs mean per patients was 8.6 ± 7.9 million Rial. The direct and indirect costs were 93.1% and 6.9% of total costs, respectively. The major cost of the disease belongs to the pharmaceutical treatment (22% of costs). The majority costs (approximately 62%) attributed to EDSS of 6-7 and >7. Furthermore, there was strong significant relationship between cost of illness and disability severity of patients (P < 0.05). Cost mean per MS patients was relatively high. Furthermore, the results showed that cost of disease had positive and significant relationships with EDSS score that is, progression of disability increase costs of patients.
Modvig, S; Degn, M; Roed, H
predicted CDMS best. Neurofilament light-chain predicted long-term disability by the multiple sclerosis severity scale (p=0.0111) and nine-hole-peg-test (p=0.0202). Chitinase-3-like-1 predicted long-term cognitive impairment by the paced auditory serial addition test (p=0.0150). CONCLUSION: Neurofilament......BACKGROUND: Cerebrospinal fluid (CSF) biomarkers have been suggested to predict multiple sclerosis (MS) after clinically isolated syndromes, but studies investigating long-term prognosis are needed. OBJECTIVE: To assess the predictive ability of CSF biomarkers with regard to MS development and long......-term disability after optic neuritis (ON). METHODS: Eighty-six patients with ON as a first demyelinating event were included retrospectively. Magnetic resonance imaging (MRI), CSF leukocytes, immunoglobulin G index and oligoclonal bands were registered. CSF levels of chitinase-3-like-1, osteopontin, neurofilament...
Jongen, P.J.; Heerings, M.; Ruimschotel, R.; Hussaarts, A.; Evers, S.; Duyverman, L.; Valkenburg-Vissers, J.; Cornelissen, J.; Bos, M.; Droffelaar, M. van; Lemmens, W.A.J.G.; Donders, R.; Van De Zande, A.; Visser, L. H.
BACKGROUND: In people with multiple sclerosis (MS) disabilities and limitations may negatively affect self-efficacy. Lowered self-efficacy has been associated with decreases in health-related quality of life, physical activity and cognitive performance. In an explorative observational study we found that a 3-day intensive social cognitive program (Can Do Treatment [CDT]) with the participation of support partners was followed by substantial increases in self-efficacy control and health-relate...
Edwards, Thomas; Pilutti, Lara A
There is evidence for the benefits of exercise training in persons with multiple sclerosis (MS). However, these benefits have primarily been established in individuals with mild-to-moderate disability (i.e., Expanded Disability Status Scale [EDSS] scores 1.0-5.5), rather than among those with significant mobility impairment. Further, the approaches to exercise training that have been effective in persons with mild-to-moderate MS disability may not be physically accessible for individuals with mobility limitations. Therefore, there is a demand for an evidence-base on the benefits of physically accessible exercise training approaches for managing disability in people with MS with mobility impairment. To conduct a systematic review of the current literature pertaining to exercise training in individuals with multiple sclerosis (MS) with severe mobility disability. Four electronic databases (PubMed, EMBASE, OvidMEDLINE, and PsychINFO) were searched for relevant articles published up until October 2016. The review focused on English-language studies that examined the effect of exercise training in people with MS with severe mobility disability, characterized as the need for assistance in ambulation or EDSS score ≥ 6.0. The inclusion criteria involved full-text articles that: (i) included participants with a diagnosis of MS; (ii) included primarily participants with a reported EDSS score ≥ 6.0 and/or definitively described disability consistent with this level of neurological impairment; and (iii) implemented a prospective, structured exercise intervention. Data were analyzed using a descriptive approach and summarized by exercise training modality (conventional or adapted exercise training), and by outcome (disability, physical fitness, physical function, and symptoms and participation). Initially, 1164 articles were identified and after removal of duplicates, 530 articles remained. In total, 512 articles did not meet the inclusion criteria. 19 articles were
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Bogosian, Angeliki; Hadwin, Julie; Hankins, Matthew; Moss-Morris, Rona
This study investigated the impact of the severity of parental multiple sclerosis, parents' expressed emotion and psychological well-being on offspring's psychological difficulties. A longitudinal study including baseline and 6-month follow-up data collected from parents and children. Adolescents (n=75), their parents with multiple sclerosis (n=56) and the partner without multiple sclerosis (n=40). Parents completed the Hospital Anxiety and Depression Scale and the Five Minutes Speech Sample, a standardised interview of expressed emotion towards their child. Parents with multiple sclerosis also completed the Expanded Disability Status Scale, a measure of illness severity. Adolescents completed the Strength and Difficulties Questionnaire, a self-report measure of psychological difficulties. Higher depression scores of the parents with multiple sclerosis at baseline correlated with increased adolescents' internalising symptoms at 6-month follow-up (γdep=0.31, P=.004). Higher expressed emotion scores of parents with multiple sclerosis at baseline were associated with increased adolescent externalising symptoms at 6-month follow-up (γEE=4.35, P=.052). There was no direct effect of severity, duration or type of multiple sclerosis on adolescents' adjustment at baseline or follow-up. Emotional distress and expressed emotion in parents with multiple sclerosis, rather than the severity and type of multiple sclerosis had an impact on adolescents' psychological difficulties. © The Author(s) 2015.
Baert, Ilse; Freeman, Jennifer; Smedal, Tori; Dalgas, Ulrik; Romberg, Anders; Kalron, Alon; Conyers, Helen; Elorriaga, Iratxe; Gebara, Benoit; Gumse, Johanna; Heric, Adnan; Jensen, Ellen; Jones, Kari; Knuts, Kathy; Maertens de Noordhout, Benoît; Martic, Andrej; Normann, Britt; Eijnde, Bert O; Rasova, Kamila; Santoyo Medina, Carmen; Truyens, Veronik; Wens, Inez; Feys, Peter
Evaluation of treatment effects on walking requires appropriate and responsive outcome measures. To determine responsiveness of 5 walking measures and provide reference values for clinically meaningful improvements, according to disability level, in persons with multiple sclerosis (pwMS). Walking tests were measured pre- and postrehabilitation in 290 pwMS from 17 European centers. Combined anchor- and distribution-based methods determined responsiveness of objective short and long walking capacity tests (Timed 25-Foot Walk [T25FW] and 2- and 6-Minute Walk Tests [2MWT and 6MWT] and of the patient-reported Multiple Sclerosis Walking Scale-12 [MSWS-12]). A global rating of change scale, from patients' and therapists' perspective, was used as external criteria to determine the area under the receiver operating characteristic curve (AUC), minimally important change (MIC), and smallest real change (SRC). Patients were stratified into disability subgroups (Expanded Disability Status Scale score ≤4 [n = 98], >4 [n = 186]). MSWS-12, 2MWT, and 6MWT were more responsive (AUC 0.64-0.73) than T25FW (0.50-0.63), especially in moderate to severely disabled pwMS. Clinically meaningful changes (MICs) from patient and therapist perspective were -10.4 and -11.4 for MSWS-12 (P < .01), 9.6 m and 6.8 m for 2MWT (P < .05), and 21.6 m (P < .05) and 9.1 m (P = .3) for 6MWT. In subgroups, MIC was significant from patient perspective for 2MWT (10.8 m) and from therapist perspective for MSWS-12 (-10.7) in mildly disabled pwMS. In moderate to severely disabled pwMS, MIC was significant for MSWS-12 (-14.1 and -11.9). Long walking tests and patient-reported MSWS-12 were more appropriate than short walking tests in detecting clinically meaningful improvement after physical rehabilitation, particularly the MSWS-12 for moderate to severely disabled pwMS. © The Author(s) 2014.
Meador, Helen E.; Reed, Barbara D.; Sen, Ananda; Gorenflo, Daniel W.
BACKGROUND Deaf persons, a documented minority population, have low reading levels and difficulty communicating with physicians. The effect of these on their knowledge of cancer prevention recommendations is unknown. METHODS A cross-sectional study of 222 d/Deaf persons in Michigan, age 18 and older, chose one of four ways (voice, video of a certified American Sign Language interpreter, captions, or printed English) to complete a self-administered computer video questionnaire about demographics, hearing loss, language history, health-care utilization, and health-care information sources, as well as family and social variables. Twelve questions tested their knowledge of cancer prevention recommendations. The outcome measures were the percentage of correct answers to the questions and the association of multiple variables with these responses. RESULTS Participants averaged 22.9% correct answers with no gender difference. Univariate analysis revealed that smoking history, types of medical problems, last physician visit, and women having previous cancer preventive tests did not affect scores. Improved scores occurred with computer use (p = 0.05), higher education (p English in multiple situations (p English use (p = 0.01) and believing that smoking was bad (p = 0.05) were associated with improved scores. CONCLUSION Persons with profound hearing loss have poor knowledge of recommended cancer prevention interventions. English use in multiple settings was strongly associated with increased knowledge. PMID:19132325
Cooper, Sally-Ann; McLean, Gary; Guthrie, Bruce; McConnachie, Alex; Mercer, Stewart; Sullivan, Frank; Morrison, Jill
Adults with intellectual disabilities have increased early mortality compared with the general population. However, their extent of multimorbidity (two or more additional conditions) compared with the general population is unknown, particularly with regards to physical ill-health, as are associations between comorbidities, neighbourhood deprivation, and age. We analysed primary health-care data on 1,424,378 adults registered with 314 representative Scottish practices. Data on intellectual disabilities, 32 physical, and six mental health conditions were extracted. We generated standardised prevalence rates by age-groups, gender, and neighbourhood deprivation, then calculated odds ratio (OR) and 95 % confidence intervals (95 % CI) for adults with intellectual disabilities compared to those without, for the prevalence, and number of condition. Eight thousand fourteen (0.56 %) had intellectual disabilities, of whom only 31.8 % had no other conditions compared to 51.6 % without intellectual disabilities (OR 0.26, 95 % 0.25-0.27). The intellectual disabilities group were significantly more likely to have more conditions, with the biggest difference found for three conditions (10.9 % versus 6.8 %; OR 2.28, 95 % CI 2.10-2.46). Fourteen physical conditions were significantly more prevalent, and four cardiovascular conditions occurred less frequently, as did any cancers, and chronic obstructive pulmonary diseases. Five of the six mental health conditions were significantly more prevalent. For the adults with intellectual disabilities, no gradient was seen in extent of multimorbidity with increasing neighbourhood deprivation; indeed findings were similar in the most affluent and most deprived areas. Co-morbidity increased with age but is highly prevalent at all ages, being similar at age 20-25 to 50-54 year olds in the general population. Multi-morbidity burden is greater, occurs at much earlier age, and the profile of health conditions differs, for adults with intellectual
The increasing number of children with profound and multiple learning difficulties means that many schools for children with severe learning difficulties are having to review the curriculum that they offer. In addition, these schools are continuing to question whether a subject-based approach, in line with the National Curriculum, is the most…
Full Text Available Young children with multiple disabilities (e.g., both cognitive and motor disabilities are confronted with severe limitations in language development from birth and later on. Stimulating the adult-child communication can decrease these limitations. Within LinguaBytes, a three-year research program, we try to stimulate language development by developing an interactive and adaptive play and learning environment, incorporating tangible objects and multimedia content, based on interactive storytelling and anchored instruction. The development of a product for such a heterogeneous user group presents substantial challenges. We use a Research-through-Design method, that is, an iterative process of developing subsequent experiential prototypes and then testing them in real-life settings, for example, a center for rehabilitation medicine. This article gives an outline of the development of the LinguaBytes play and learning environment from the earliest studies up to the current prototype, CLICK-IT.
Quality of Diagnosis and Treatment Plans After Using the 'Diagnostic Guideline for Anxiety and Challenging Behaviours' in People with Intellectual Disabilities: A Comparative Multiple Case Study Design.
Pruijssers, Addy; van Meijel, Berno; Maaskant, Marian; Keeman, Noortje; van Achterberg, Theo
People with intellectual disabilities often have a multitude of concurrent problems due to the combination of cognitive impairments, psychiatric disorders (particularly anxiety) and related challenging behaviours. Diagnoses in people with intellectual disabilities are complicated. This study evaluates the quality of the diagnoses and treatment plans after using a guideline that was developed to support professionals in their diagnostic tasks. A comparative multiple case study with an experimental and control condition, applying deductive analyses of diagnoses and treatment plans. The analyses revealed that the number of diagnostic statements and planned treatment actions in the experimental group was significantly larger and more differentiated than in the control condition. In the control group, consequential harm and protective factors were hardly mentioned in diagnoses and treatment plans. Working with the 'Diagnostic Guideline for Anxiety and CB' leads to improved diagnoses and treatment plans compared with care as usual. © 2015 John Wiley & Sons Ltd.
Leon-Sarmiento, Fidias E.; Bayona, Edgardo A.; Bayona-Prieto, Jaime; Osman, Allen; Doty, Richard L.
In this study we demonstrate that myasthenia gravis, an autoimmune disease strongly identified with deficient acetylcholine receptor transmission at the post-synaptic neuromuscular junction, is accompanied by a profound loss of olfactory function. Twenty-seven MG patients, 27 matched healthy controls, and 11 patients with polymiositis, a disease with peripheral neuromuscular symptoms analogous to myasthenia gravis with no known central nervous system involvement, were tested. All were administered the University of Pennsylvania Smell Identification Test (UPSIT) and the Picture Identification Test (PIT), a test analogous in content and form to the UPSIT designed to control for non-olfactory cognitive confounds. The UPSIT scores of the myasthenia gravis patients were markedly lower than those of the age- and sex-matched normal controls [respective means (SDs) = 20.15 (6.40) & 35.67 (4.95); p<0.0001], as well as those of the polymiositis patients who scored slightly below the normal range [33.30 (1.42); p<0.0001]. The latter finding, along with direct monitoring of the inhalation of the patients during testing, implies that the MG-related olfactory deficit is unlikely due to difficulties sniffing, per se. All PIT scores were within or near the normal range, although subtle deficits were apparent in both the MG and PM patients, conceivably reflecting influences of mild cognitive impairment. No relationships between performance on the UPSIT and thymectomy, time since diagnosis, type of treatment regimen, or the presence or absence of serum anti-nicotinic or muscarinic antibodies were apparent. Our findings suggest that MG influences olfactory function to the same degree as observed in a number of neurodegenerative diseases in which central nervous system cholinergic dysfunction has been documented. PMID:23082113
Gian C. Navarro Chumbes
Full Text Available Enfermera de 34 años de edad que acude a la Unidad Médica de Valoración de Incapacidades del INSS (Instituto Nacional de Seguridad Social para valoración de Incapacidad Temporal (IT; diagnosticada de Esclerosis Múltiple (EM hace 10 años, presentó 6 brotes, por lo que requirió tratamiento con Acetato de Glatirámero y se le adaptó el puesto de trabajo. Actualmente tiene un EDSS (Expanded Disability Status Scale estimado de 1,0, y actualmente no está con tratamiento inmunomodulador. Este caso clínico lo que busca es conocer de qué manera se valora la incapacidad laboral en los casos de trabajadores que padecen de EM, asimismo cómo se determina el grado de menoscabo en función del EDSS y qué aspectos laborales son tomados en consideración.A 34-year old woman, nurse, who arrives to the Medical Assessment Disability Unit of SSNI (Social Security National Institute for to assess Temporary Disability (TD, she was diagnosed of Multiple Sclerosis (MS 10 years ago, she had 6 outbreaks and because of that she was treated with Glatiramer Acetate and also her workstation was adapted. At the moment she has an EDSS (Expanded Disability Status Scale of 1.0, and now she does not receive immunomodulator treatment. With this case report we want to know the way that labour disability is evaluated for workers that complain of MS, also how the damage degree is determined according to EDSS and what labour aspects are taken into consideration.
Full Text Available Background and aim: Multiple sclerosis is a chronic and debilitating nervous system, leading to demyelination of the central nervous system (brain and spinal cord. Regular exercise and general physical activity is important to maintain health and prevent disease, already well known. Therefore the aim of this study was to evaluate the effect of 12 weeks of combined exercises (strength training, Strengthening Exercises, cardio respiratory endurance, a variety of static and dynamic balance exercises, exercises of the trunk (pilates training and walking on the treadmill training with body weight support on interferon gamma and Expanded Disability Status Scale women with multiple sclerosis. Methods: In the present experimental rsearch, female patients who were admitted to the MS Society of Shahrekord, Iran, were divided into three groups based on physical disability scores. In the first group (physical disability scale less than 4.5, 44 people were randomly selected to one experimental group (22 patients and control group (n = 22. In the second group (scale physical disability between 5 and 5.6, 26 patients were enrolled and randomly assigned to an experimental group (n = 13 and control group (n = 13. The third (Physical Disability Scale-up to 6.5, 26 patients were enrolled and randomly assigned to an experimental group (n = 13 and control group (n = 13. A total of 96 patients were participated in this study. Experimental groups of first, second and third were done its own intervention separately. While the control group received stretching exercises, workout schedule for the experimental group was of 12 weeks, three sessions of lasted one hour. Anthropometric factors and interferon-gamma were measured before and after training with the appropriate tools. Serum levels of INF-γ was determind using a commercial ELISA kit and EDSS scores were measured using the measure of disability in patients with MS. Data analysis was performed using descriptive
Hengst, Sophie M C; Smid, Geert E; Laban, Cornelis J
Emerging evidence suggests that the loss of loved ones under traumatic circumstances is highly prevalent among refugees and asylum seekers. We evaluated the effects of traumatic and multiple losses of family members and friends on psychopathology, disability, and quality of life in Iraqi asylum seekers in the Netherlands, and investigated mediation of these effects through psychopathology. Respondents (N = 294) completed structured Arabic interviews. Data were analyzed using structural equation modeling. The loss of a loved one was reported by 87.6% of the sample. Traumatic and multiple losses of family members independently predicted psychopathology, taking the effects of other traumatic events, postmigration stressors, and sociodemographic characteristics into account. Effects of traumatic and multiple losses on quality of life and disability were either partially or fully mediated by psychopathology. These findings highlight the need to evaluate and treat the effects of the loss of loved ones when working with asylum seekers and refugees as well as to incorporate grief-related psychopathology in diagnostic classifications.
Bleich, Sara N.; Sherrod, Cheryl; Chiang, Anne; Boyd, Cynthia; Wolff, Jennifer; DuGoff, Eva; Salzberg, Claudia; Anderson, Keely; Leff, Bruce
Introduction Finding ways to provide better and less expensive health care for people with multiple chronic conditions or disability is a pressing concern. The purpose of this systematic review was to evaluate different approaches for caring for this high-need and high-cost population. Methods We searched Medline for articles published from May 31, 2008, through June 10, 2014, for relevant studies. Articles were considered eligible for this review if they met the following criteria: included people with multiple chronic conditions (behavioral or mental health) or disabilities (2 or more); addressed 1 or more of clinical outcomes, health care use and spending, or patient satisfaction; and compared results from an intervention group with a comparison group or baseline measurements. We extracted information on program characteristics, participant characteristics, and significant (positive and negative) clinical findings, patient satisfaction, and health care use outcomes. For each outcome, the number of significant and positive results was tabulated. Results Twenty-seven studies were included across 5 models of care. Of the 3 studies reporting patient satisfaction outcomes, 2 reported significant improvements; both were randomized controlled trials (RCTs). Of the 14 studies reporting clinical outcomes, 12 reported improvements (8 were RCTs). Of the 13 studies reporting health care use and spending outcomes, 12 reported significant improvements (2 were RCTs). Two models of care — care and case management and disease management — reported improvements in all 3 outcomes. For care and case management models, most improvements were related to health care use. For the disease management models, most improvements were related to clinical outcomes. Conclusions Care and case management as well as disease management may be promising models of care for people with multiple chronic conditions or disabilities. More research and consistent methods are needed to understand the
Bleich, Sara N; Sherrod, Cheryl; Chiang, Anne; Boyd, Cynthia; Wolff, Jennifer; DuGoff, Eva; Chang, Eva; Salzberg, Claudia; Anderson, Keely; Leff, Bruce; Anderson, Gerard
Finding ways to provide better and less expensive health care for people with multiple chronic conditions or disability is a pressing concern. The purpose of this systematic review was to evaluate different approaches for caring for this high-need and high-cost population. We searched Medline for articles published from May 31, 2008, through June 10, 2014, for relevant studies. Articles were considered eligible for this review if they met the following criteria: included people with multiple chronic conditions (behavioral or mental health) or disabilities (2 or more); addressed 1 or more of clinical outcomes, health care use and spending, or patient satisfaction; and compared results from an intervention group with a comparison group or baseline measurements. We extracted information on program characteristics, participant characteristics, and significant (positive and negative) clinical findings, patient satisfaction, and health care use outcomes. For each outcome, the number of significant and positive results was tabulated. Twenty-seven studies were included across 5 models of care. Of the 3 studies reporting patient satisfaction outcomes, 2 reported significant improvements; both were randomized controlled trials (RCTs). Of the 14 studies reporting clinical outcomes, 12 reported improvements (8 were RCTs). Of the 13 studies reporting health care use and spending outcomes, 12 reported significant improvements (2 were RCTs). Two models of care - care and case management and disease management - reported improvements in all 3 outcomes. For care and case management models, most improvements were related to health care use. For the disease management models, most improvements were related to clinical outcomes. Care and case management as well as disease management may be promising models of care for people with multiple chronic conditions or disabilities. More research and consistent methods are needed to understand the most appropriate care for these high-need and
Lee, Youngsun; Wehmeyer, Michael L.; Palmer, Susan B.; Williams-Diehm, Kendra; Davies, Daniel K.; Stock, Steven E.
This study examined individual and instructional predictors of the self-determination of students with disabilities, as measured by the "Arc's Self-Determination Scale" and the student version of the "AIR Self-Determination Scale." The general findings indicated that instructional, knowledge, and dispositional factors were stronger predictors of…
Gibbs, Anna S.; Hinton, Vanessa M.; Flores, Margaret M.
Children who struggle in mathematics have a limited understanding of the foundational processes of mathematics. A lack of conceptual understanding causes students to fall behind as they progress through the core curriculum. Children at high risk for developing mathematics disabilities fail to gain numeracy knowledge. The purpose of this case study…
Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Oliva, Doretta; Alberti, Gloria; Lang, Russell
This study extended the assessment of a newly developed computer-aided telephone system with two participants (adults) who presented with blindness or severe visual impairment and motor or motor and intellectual disabilities. For each participant, the study was carried out according to an ABAB design, in which the A represented baseline phases and…
Helps, Dawn H.; Herzberg, Tina S.
Participation in preferred leisure activities is intrinsically motivating and satisfying. Many individuals with and without disabilities enjoy informal leisure activities, such as watching movies, listening to music, shopping, and going out to eat (Dattilo, Estrella, Light, McNaughton, & Seabury, 2008). Sometimes leisure activities are provided to…
Carvalho, Claudia M B; Vasanth, Shivakumar; Shinawi, Marwan
The 17p13.1 microdeletion syndrome is a recently described genomic disorder with a core clinical phenotype of intellectual disability, poor to absent speech, dysmorphic features, and a constellation of more variable clinical features, most prominently microcephaly. We identified five subjects...... of discrete gene pairings induce microcephaly. Taken together, these studies support a model in which concomitant dosage perturbation of multiple genes within the CNV drive the microcephaly and possibly other neurodevelopmental phenotypes associated with rearrangements in the 17p13.1 SRO....
Lachowska, Magdalena; Pastuszka, Agnieszka; Łukaszewicz-Moszyńska, Zuzanna; Mikołajewska, Lidia; Niemczyk, Kazimierz
Cochlear implants have become the method of choice for the treatment of severe-to-profound hearing loss in both children and adults. Its benefits are well documented in the pediatric and adult population. Also deaf children with additional needs, including autism, have been covered by this treatment. The aim of this study was to assess the benefits from cochlear implantation in deafened children with autism as the only additional disability. This study analyzes data of six children. The follow-up time was at least 43 months. The following data were analyzed: medical history, reaction to music and sound, Ling's six sounds test, onomatopoeic word test, reaction to spoken child's name, response to requests, questionnaire given to parents, sound processor fitting sessions and data. After cochlear implantation each child presented other communication skills. In some children, the symptoms of speech understanding were observed. No increased hyperactivity associated with daily use cochlear implant was observed. The study showed that in autistic children the perception is very important for a child's sense of security and makes contact with parents easier. Our study showed that oral communication is not likely to be a realistic goal in children with cochlear implants and autism. The implantation results showed benefits that varied among those children. The traditional methods of evaluating the results of cochlear implantation in children with autism are usually insufficient to fully assess the functional benefits. These benefits should be assessed in a more comprehensive manner taking into account the limitations of communication resulting from the essence of autism. It is important that we share knowledge about these complex children with cochlear implants. Copyright © 2016 Associação Brasileira de Otorrinolaringologia e Cirurgia Cérvico-Facial. Published by Elsevier Editora Ltda. All rights reserved.
Blanco, Román; Pérez-Rico, Consuelo; Puertas-Muñoz, Inmaculada; Ayuso-Peralta, Lucía; Boquete, Luciano; Arévalo-Serrano, Juan
To objectively evaluate the visual function, and the relationship between disability and optic nerve dysfunction, in patients with multiple sclerosis (MS) and optic neuritis (ON), using multifocal visual evoked potentials (mfVEP). This observational, cross-sectional study assessed 28 consecutive patients with clinically definite MS, according to the McDonald criteria, and 19 age-matched healthy subjects. Disability was recorded using the Expanded Disability Status Scale (EDSS) score. The patients' mfVEP were compared to their clinical, psychophysical (Humphrey perimetry) and structural (optic coherence tomography (OCT)) diagnostic test data. We observed a significant agreement between mfVEP amplitude and Humphrey perimetry/OCT in MS-ON eyes, and between mfVEP amplitude and OCT in MS but non-ON eyes. We found significant differences in EDSS score between patients with abnormal and normal mfVEP amplitudes. Abnormal mfVEP amplitude defects (from interocular and monocular probability analysis) were found in 67.9% and 73.7% of the MS-ON and MS-non-ON group eyes, respectively. Delayed mfVEP latencies (interocular and monocular probability analysis) were seen in 70.3% and 73.7% of the MS-ON and MS-non-ON groups, respectively. We found a significant relationship between mfVEP amplitude and disease severity, as measured by EDSS score, that suggested there is a role for mfVEP amplitude as a functional biomarker of axonal loss in MS.
Son Nghiem, firstname.lastname@example.org Jet Propulsion Laboratory, California Institute of Technology, Pasadena, California, United States The ice cover on the Arctic Ocean has undergone a face lift that removes much of the older and thicker perennial ice and replaces it with the younger and thinner seasonal ice. Although the sea ice cover is a thin skin compared to the depth of the Arctic Ocean, this face lift exerts profound change in the Arctic environment. Here, we present scatterometer remote sensing of Arctic sea ice change and its implication on chemical processes from the ice surface to the troposphere extending into the internal continental land. In the context of a half century change, the extent of perennial ice declines at rate of 0.5 million km2 per decade in the 1970s-1990s while there is no discernable trend in the 1950s-1960s. Abruptly, the rate of decrease has tripled to 1.5 million km2 per decade in the 2000s. A record was set in the reduction of Arctic perennial ice extent in winter 2008. By 1 March 2008, perennial ice extent was reduced by one million km2 compared to that at the same time in 2007. On 1 May 2009, perennial ice extent was reduced to 2.1 million km2 , which is a virtual tie to 2.2 million km2 of perennial ice extent on 1 May 2008 given the uncertainty of ±0.2 million km2 . Although the extent of perennial ice extent is similar, its distribution is quite different, with a significant perennial ice pack in the Beaufort Sea in 2008, and in contrast a large expanse of perennial ice along the Transpolar Drift Stream in 2009. The continuing drastic reduction of perennial ice significantly decreases the overall surface albedo, resulting in enhanced solar heat absorption in spring and summer, which further decreases the Arctic ice pack through the ice-albedo feedback mechanism and ice melt from the underside due to oceanic thermodynamic interactions. Satellite maps of sea ice class distribution show the closely conformation with patterns of
Jongen, Peter Joseph; Heerings, Marco; Ruimschotel, Rob; Hussaarts, Astrid; Evers, Silvia; Duyverman, Lotte; Valkenburg-Vissers, Joyce; Cornelissen, Job; Bos, Michel; van Droffelaar, Maarten; Lemmens, Wim A; Donders, Rogier; van der Zande, Anneke; Visser, Leo H
In people with multiple sclerosis (MS) disabilities and limitations may negatively affect self-efficacy. Lowered self-efficacy has been associated with decreases in health-related quality of life, physical activity and cognitive performance. In an explorative observational study we found that a 3-day intensive social cognitive program (Can Do Treatment [CDT]) with the participation of support partners was followed by substantial increases in self-efficacy control and health-related quality of life 6 months after treatment in those people with MS who had relapsing remitting disease and low disability. CDT is a sociologically oriented approach, its goal is to uncover and promote existing capabilities, and the notion "stressor" is the central concept. CDT's components are plenary group sessions, small group sessions, consultations, a theatre evening, and start of the day with a joint activity. The small group sessions form the actual training. Depending on their individual goals the participants join the training groups 'Body', 'Feeling' or 'Life', to work out their aims and to reduce their stressors. The multidisciplinary team includes a psychiatrist, psychiatric nurse, neurologist, specialized MS nurse, physiotherapist, dance therapist, and a person with MS. To evaluate the (cost)effectiveness of CDT in persons with relapsing remitting MS and low disability we perform a single-centre, randomized controlled trial in 140 patients, with or without support partners. The primary outcome is self-efficacy control. The secondary outcomes are self-efficacy function, health-related quality of life, autonomy and participation, anxiety, depression, cost effectiveness and cost utility. The tertiary outcome is care-related strain to support partners. Outcomes are assessed at baseline and at 1, 3 and 6 months after CDT. This randomized controlled trial will adequately evaluate the clinical and cost effectiveness of a 3-day intensive social cognitive program in people with
Lee, Youngsun; Wehmeyer, Michael; Palmer, Susan; Williams-Diehm, Kendra; Davies, Daniel; Stock, Steven
This study examined individual and instructional predictors of the self-determination of students with disabilities, as measured by The Arc’s Self-Determination Scale and the AIR Self-Determination Scale, Student version. The general findings indicated that instructional, knowledge and dispositional factors predicted students’ self-determination over personal predictor variables. In particular, self-efficacy and outcome expectancy scores, student-directed transition planning instruction, and ...
Tom, Sarah E.; Adachi, Jonathan D.; Anderson, Frederick A.; Boonen, Steven; Chapurlat, Roland D.; Compston, Juliet E.; Cooper, Cyrus; Gehlbach, Stephen H.; Greenspan, Susan L.; Hooven, Frederick H.; Nieves, Jeri W.; Pfeilschifter, Johannes; Roux, Christian; Silverman, Stuart; Wyman, Allison; LaCroix, Andrea Z.
Objectives To test whether women age ≥ 55 years with increasing evidence of a frailty phenotype would have greater risk of fractures, disability, and recurrent falls, compared with women who were not frail, across geographic areas (Australia, Europe, and North America) and age groups. Design Multinational, longitudinal, observational cohort study. Setting The Global Longitudinal Study of Osteoporosis in Women (GLOW). Participants Women (n=48,636) age ≥ 55 years enrolled at sites in Australia, Europe, and North America. Measurements Components of frailty (slowness/weakness, poor endurance/exhaustion, physical activity, and unintentional weight loss) at baseline and report of fracture, disability, and recurrent falls at 1 year of follow-up were investigated. Women also reported health and demographic characteristics at baseline. Results Among those age < 75 years, women from the United States were more likely to be prefrail and frail than women from Australia/Canada, and Europe. The distribution of frailty was similar by region for women age ≥ 75 years. Odds ratios from multivariable models for frailty versus non frailty were 1.23 (95% CI = 1.07–1.42) for fracture, 2.29 (95% CI = 2.09–2.51) for disability, and 1.68 (95% CI = 1.54–1.83) for recurrent falls. The associations for pre-frailty versus non frailty were weaker but still indicated statistically significant increased risk for each outcome. Overall, associations between frailty status and each outcome were similar across age and geographic region. Conclusion Increased evidence of a frailty phenotype is associated with increased risk for fracture, disability, and falls among women age ≥ 55 years in 10 countries, with similar patterns across age and geographic region. PMID:23351064
Fukushima, Kunihiro; Kawasaki, Akihiro; Nagayasu, Rie; Kunisue, Kazuya; Maeda, Yukihide; Kariya, Shin; Kataoka, Yuko; Nishizaki, Kazunori
Learning disability combined with hearing impairment (LDHI) is a poor prognostic factor for the language development of hearing impaired children after educational intervention. A typical example of a child with LDHI and effective interventions provided by cochlear implants are presented in this report. A case of congenital cytomegaloviral infection that showed dysgraphia as well as profound deafness was reported and an underlying visual processing problem diagnosed in the present case caused the patient's dysgraphia. The dysgraphia could be circumvented by the use of auditory memory fairly established by a cochlear implant.
MacCrosain, A M
Sleep problems are more common amongst children with intellectual disability than other children. The implications for families, teachers and classmates, as well as the children themselves, are profound.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Oliva, Doretta; Boccasini, Adele; La Martire, Maria L; D'Amico, Fiora; Sasanelli, Giovanni
Study I used typical microswitch-cluster programs to promote adaptive responding (i.e., object manipulation) and reduce inappropriate head or head-trunk forward leaning with a boy and a woman with multiple disabilities. Optic, tilt, and vibration microswitches were used to record their adaptive responses while optic and tilt microswitches monitored their posture. The study included an ABB(1)AB(1) sequence, in which A represented baseline phases, B represented an intervention phase in which adaptive responses were always followed by preferred stimulation, and B(1) represented intervention phases in which the adaptive responses led to preferred stimulation only if the inappropriate posture was absent. Study II assessed a non-typical, new microswitch-cluster program to promote two adaptive responses (i.e., mouth cleaning to reduce drooling effects and object assembling) with a man with multiple disabilities. Initially, the man received preferred stimulation for each cleaning response. Then, he received stimulation only if mouth cleaning was preceded by object assembling. The results of Study I showed that both participants had large increases in adaptive responding and a drastic reduction in inappropriate posture during the B(1) phases and a 2-week post-intervention check. The results of Study II showed that the man learned to control drooling effects through mouth cleaning and used object assembling to extend constructive engagement and interspace cleaning responses functionally. The practical implications of the findings are discussed. Copyright © 2013 Elsevier Ltd. All rights reserved.
Cervigón, Raquel; Moreno, Javier; Pérez-Villacastín, Julián; Castells, Francisco
During atrial fibrillation (AF), multiple wandering propagation wavelets at high rates drift around both atria under controversial hierarchical models. Antiarrhythmic drugs modify the cardiac ionic currents supporting the fibrillation process within the atria, and can alter AF propagation dynamics and even terminate the arrhythmia. However, some other drugs, theoretically nonantiarrhythmic, may slightly block particular cardiac ionic currents through uncertain mechanisms in such a subtle way at regular heart rates that may have been pharmacologically overlooked. These potential effects might be better exposed at much higher activation rates as in AF, where atrial cells depolarize over 400 times per second. In this review, we aimed to compile and discuss results from several studies evaluating the net effect of profound sedation with propofol on atrial cells and atrioventricular (AV) conduction. Propofol is a very commonly used anesthetic agent, and its possible effect on AF dynamics has systematically not been taken into account in the myriad of clinical studies dealing with AF intracardiac recordings. The possible effect of sedation with propofol on AF was evaluated through the analysis of AF propagation patterns before and after its infusion in a series of patients submitted to pulmonary vein ablation. Effect on AV conduction will be discussed as well. ©2013, The Authors. Journal compilation ©2013 Wiley Periodicals, Inc.
Full Text Available Dysregulation of the complement system is evident in many CNS diseases but mechanisms regulating complement activation in the CNS remain unclear. In a recent large rat genome-wide expression profiling and linkage analysis we found co-regulation of complement C3 immediately downstream of butyrylcholinesterase (BuChE, an enzyme hydrolyzing acetylcholine (ACh, a classical neurotransmitter with immunoregulatory effects. We here determined levels of neurofilament-light (NFL, a marker for ongoing nerve injury, C3 and activity of the two main ACh hydrolyzing enzymes, acetylcholinesterase (AChE and BuChE, in cerebrospinal fluid (CSF from patients with MS (n = 48 and non-inflammatory controls (n = 18. C3 levels were elevated in MS patients compared to controls and correlated both to disability and NFL. C3 levels were not induced by relapses, but were increased in patients with ≥9 cerebral lesions on magnetic resonance imaging and in patients with progressive disease. BuChE activity did not differ at the group level, but was correlated to both C3 and NFL levels in individual samples. In conclusion, we show that CSF C3 correlates both to a marker for ongoing nerve injury and degree of disease disability. Moreover, our results also suggest a potential link between intrathecal cholinergic activity and complement activation. These results motivate further efforts directed at elucidating the regulation and effector functions of the complement system in MS, and its relation to cholinergic tone.
Antley, Tina M. B.
Two recent pieces of federal legislation have greatly influenced how schools educate students with disabilities. While Individuals with Disabilities Education Improvement Act (2004) requires that schools assess students with disabilities using the same assessment instruments with which their non-disabled peers are tested, the No Child Left Behind…
Lukas, C.; Sombekke, M.H.; Bellenberg, B.; Hahn, H.K.; Popescu, V.; Bendfeldt, K.; Radue, E.W.; Gass, A.; Borgwardt, S.J.; Kappos, L.; Naegelin, Y.; Knol, D.L.; Polman, C.H.; Geurts, J.J.G.; Barkhof, F.; Vrenken, H.
Purpose: To determine whether spinal cord atrophy differs among disease subtypes in multiple sclerosis (MS) and whether it offers diagnostic and clinical correlative information beyond that provided by other magnetic resonance (MR) imaging markers. Materials and Methods: The institutional review
Elberling, Jesper; Gulmann, Nils; Rasmussen, Alice
Multiple chemical sensitivity (MCS) is a chronic nonallergic, multisymptom disorder triggered by common environmental chemicals in concentrations considered nontoxic for most individuals. The condition may lead to loss of occupation and social isolation, and no effective treatment has been reported...
Full Text Available People with developmental disabilities can experience any psychological abnormalitiy and psychiatric illness as do people without developmental disabilities. Due to different diagnostic criteria, assessment procedures and instruments, we lack definite prevalence rates for people with developmental disabilities, also suffering from mental health problems, eventhough most studies place the rate at 20 to 40%. One of the possible treatment alternatives for augmenting psychological well-being is psychotherapy, but is extremely rarely used for people with severe and profound disabilities, where speech cannot be the main therapeutic medium. So, those that are included in the psychotherapuetic process are predominantly clients with mild developmental disabilities, and they are mostly in cognitive-behavioral therapy. Recently, two models of (psychotherapy for persons with severe and profound developmental disabilities were developed: developmental-dynamic relationship therapy and attachment-based behaviour therapy for children. Conceptually, they both originate form developmental psychoanalytic theories.
Stenager, E; Knudsen, L; Jensen, K
In a cross-sectional investigation of 116 patients with multiple sclerosis, the social and sparetime activities of the patient were assessed by both patient and his/her family. The assessments were correlated to physical disability which showed that particularly those who were moderately disabled...
A prospective web-based patient-centred interactive study of long-term disabilities, disabilities perception and health-related quality of life in patients with multiple sclerosis in The Netherlands: the Dutch Multiple Sclerosis Study protocol
Jongen, P.J.; Heerings, M.; Lemmens, W.A.; Donders, R.; Zande, A. van der; Noort, E.; Kool, A.
BACKGROUND: In the past two decades the widespread use of disease modifying drugs with moderate to strong efficacy has changed the natural course of multiple sclerosis (MS). Health care professionals, researchers, patient organizations and health authorities are in need of recent information about
A prospective web-based patient-centred interactive study of long-term disabilities, disabilities perception and health-related quality of life in patients with multiple sclerosis in The Netherlands : The Dutch Multiple Sclerosis Study protocol
Jongen, Peter Joseph; Heerings, Marco; Lemmens, Wim A.; Donders, Rogier; van der Zande, Anneke; van Noort, Esther; Kool, Anton
Background: In the past two decades the widespread use of disease modifying drugs with moderate to strong efficacy has changed the natural course of multiple sclerosis (MS). Health care professionals, researchers, patient organizations and health authorities are in need of recent information about
Uwineza, Annette; Hitayezu, Janvier; Jamar, Mauricette; Caberg, Jean-Hubert; Murorunkwere, Seraphine; Janvier, Ndinkabandi; Bours, Vincent
Global developmental delay (GDD) is defined as a significant delay in two or more developmental domains: gross or fine motor, speech/language, cognitive, social/personal and activities of daily living. Many of these children will go on to be diagnosed with intellectual disability (ID), which is most commonly defined as having an IQ Patau syndrome. Other identified chromosomal abnormalities included 47,XX,+del(9)(q11), 46,XY,del(13)(q34) and 46,XX,der(22)t(10;22)(p10;p10)mat. In conclusion, our results highlight the high frequency of cytogenetically detectable abnormalities in this series, with implications for the burden on the healthcare. This study demonstrates the importance of cytogenetic analysis in patients with GDD/ID and MCA. PMID:26507407
Uwineza, Annette; Hitayezu, Janvier; Jamar, Mauricette; Caberg, Jean-Hubert; Murorunkwere, Seraphine; Janvier, Ndinkabandi; Bours, Vincent; Mutesa, Leon
Global developmental delay (GDD) is defined as a significant delay in two or more developmental domains: gross or fine motor, speech/language, cognitive, social/personal and activities of daily living. Many of these children will go on to be diagnosed with intellectual disability (ID), which is most commonly defined as having an IQ Patau syndrome. Other identified chromosomal abnormalities included 47,XX,+del(9)(q11), 46,XY,del(13)(q34) and 46,XX,der(22)t(10;22)(p10;p10)mat. In conclusion, our results highlight the high frequency of cytogenetically detectable abnormalities in this series, with implications for the burden on the healthcare. This study demonstrates the importance of cytogenetic analysis in patients with GDD/ID and MCA. © The Author . Published by Oxford University Press. All rights reserved. For Permissions, please email: email@example.com.
We know that children who were born profoundly deaf have much difficulty to learn to speak English or Japanese. But is it possible that profoundly deaf children learn to read written English or Japanese? Some researchers mention that early exposure to fingerspelling actually helps deaf children become better readers. Then I tried to find the reason why fingerspelling helps deaf children develop their reading ability and examined how to develop deaf children’s reading ability with fingerspelli...
Fragoso, Yara Dadalti; Adoni, Tarso; Alves-Leon, Soniza Vieira; Apostolos-Pereira, Samira L; Arruda, Walter Oleschko; Brooks, Joseph B Bidin; Cal, Henrique S Rodrigues; Damasceno, Carlos A Albuquerque; Gama, Paulo Diniz; Goncalves, Marcus V Magno; Jesus, Carlos A da Silva de; Machado, Suzana C Nunes; Mansur, Letícia Fezer; Matta, Andre P da Cunha; Mendes, Maria Fernanda; Morales, Rogerio Rizo; Nobrega, Adaucto Wanderley da; Parolin, Monica K Fiuza; Peres, Mario Pietro; Ribeiro, Marlise de Castro; Ruocco, Heloisa Helena; Scherpenhuijzen, Simone; Siquinelli, Fabio; Stoney, Patrick N; Varela, Daniel Lima; Eboni, Audred Cristina Biondo; Spessotto, Caroline Vieira; Rocha, Elisa Teixeira da; Lacerda, Pamela Emanuele
Vitamin D has taken center stage in research and treatment of multiple sclerosis (MS). The objective of the present study was to assess the serum vitamin D levels of a large population of patients with MS and controls living in a restricted tropical area. Data from 535 patients with MS and 350 control subjects were obtained from 14 cities around the Tropic of Capricorn. The mean serum 25-OH vitamin D level was 26.07 ± 10.27 ng/mL for the control subjects, and 28.03 ± 12.19 ng/mL for patients with MS. No correlation was observed between vitamin D levels and the disability of patients over the disease duration. At least for the region around the Tropic of Capricorn, serum levels of vitamin D typically are within the range of 20 to 30 ng/mL for controls and patients with MS.
Yara Dadalti Fragoso
Full Text Available ABSTRACT Objective: Vitamin D has taken center stage in research and treatment of multiple sclerosis (MS. The objective of the present study was to assess the serum vitamin D levels of a large population of patients with MS and controls living in a restricted tropical area. Methods: Data from 535 patients with MS and 350 control subjects were obtained from 14 cities around the Tropic of Capricorn. Results: The mean serum 25-OH vitamin D level was 26.07 ± 10.27 ng/mL for the control subjects, and 28.03 ± 12.19 ng/mL for patients with MS. No correlation was observed between vitamin D levels and the disability of patients over the disease duration. Conclusion: At least for the region around the Tropic of Capricorn, serum levels of vitamin D typically are within the range of 20 to 30 ng/mL for controls and patients with MS.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Campodonico, Francesca
Motor impairments such as lack of standing and/or independent ambulation are common among persons with multiple disabilities. These two studies assessed technology-aided programs for persons with those impairments. Specifically, Study I assessed a program to teach two non-ambulatory adults to hand reach a stimulation-linked object by standing up. Study II assessed a program to teach a child and a man to ambulate while holding a rail or following a corridor wall. Standing increased from below 15% to about or over 80% of the session duration in Study I. The participants of Study II managed to complete brief ambulation trials independent of guidance. These performance achievements were discussed in relation to the technology-aided programs employed in the studies and the programs' applicability in daily contexts. © The Author(s) 2016.
Full Text Available Introduction: Multiple sclerosis (MS is an inflammatory demyelinating disease of the central nervous system (CNS. Because of limited efficacy and adverse side effects, identifying novel therapeutic and protective agents is important. The aim of this study is to examine the correlations between expanded disability status scale (EDSS and cytokines after intervention with co-supplemented hemp seed and evening primrose oils and hot-natured diet in patients with relapsing-remitting multiple sclerosis (RRMS. Methods: We studied a group of 23 patients with clinically definite RRMS, with EDSS<6 who received co-supplemented hemp seed and evening primrose oils with advising hot-natured diet. Clinically EDSS and immunological factors (plasma cytokines of IL-4, IFN-γ and IL-17 were assessed at baseline and after 6 months. Results: Mean follow-up was 180±2.9 days (N=23, 7 Male and 16 Females aged 25.0±7.5 years with disease duration 6.26±3.9 years. After 6 months, significant improvements in extended disability status score were found in the patients in agreement with decrease cytokines of IFN-γ and IL-17 and increase cytokines of IL-4. Clinical and immunological parameters showed improvement in the patients after the intervention. Conclusion: Our study shows that co-supplemented hemp seed and evening primrose oils with hot-natured diet can have beneficial effects in improving clinical symptoms in relapsing remitting MS patients and significant correlation was found between EDSS and immunological findings.
... SEARCH Definition Treatment Prognosis Clinical Trials Organizations Publications Definition An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the ...
Full Text Available Disabled people, amidst political and social gains, continue to experience discrimination in multiple areas. Understanding how such discrimination, named here as ableism, operates is important and may require studying perspectives of people who do not claim a disability identity. Ableism may be expressed in a number of ways, and examining how a particular group, in this case siblings of disabled people, understand and value disability may contribute to overall understandings about how ableism works. Thus, the purpose of this study is to explore relationships between siblings of disabled people's broad societal understandings of disability and their attitudes towards it. In order to tease out this relationship further we have also examined factors that impact how people define disability. Using both social psychological and sociological approaches, we have contextualized individual attitudes as providing additional new information about social meanings of disability, and set this study's results against the larger backdrops of debates over meanings of disability within Disability Studies. In our research, participants revealed complex understandings of disability, but most often defined disability as preventing or slowing action, as an atypical function, a lack of independence, and as a socially constructed obstacle. Participants' unconscious (implicit disability attitudes significantly related to their understandings of disability as lacking independence, impairment, and/or in relation to the norm, and their conscious (explicit disability attitudes. Moreover, longer employment in a disability-related industry was correlated with defining disability as a general difference, rather than as slowing or limiting of tasks.
Bekkema, N; de Veer, A J E; Hertogh, C M P M; Francke, A L
The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics. This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively. Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas. If caregivers and relatives embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end-of-life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end-of-life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a
... Situations Talking to Your Parents - or Other Adults Learning Disabilities KidsHealth > For Teens > Learning Disabilities Print A ... study engineering as he'd hoped? What Are Learning Disabilities? For someone diagnosed with a learning disability, ...
Sjoukes, L.; Koot, H. M.; Kooijman, A. C.; Evenhuis, H.
This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with observant-based
Evenhuis, H.M.; Sjoukes, L.; Koot, H.M.; Kooijman, A.C.
Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with
Evenhuis, Heleen M.; Sjoukes, L.; Koot, H. M.; Kooijman, A. C.
Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with observant-based questionnaires, prior to expert…
Croft, Arthur C; Milam, Bryce; Meylor, Jade; Manning, Richard
Because of previously published recommendations to modify the Neck Disability Index (NDI), we evaluated the responsiveness and dimensionality of the NDI within a population of adult whiplash-injured subjects. The purpose of the present study was to evaluate the responsiveness and dimensionality of the NDI within a population of adult whiplash-injured subjects. Subjects who had sustained whiplash injuries of grade 2 or higher completed an NDI questionnaire. There were 123 subjects (55% female, of which 36% had recovered and 64% had chronic symptoms. NDI subscales were analyzed using confirmatory factor analysis, considering only the subscales and, secondly, using sex as an 11th variable. The subscales were also tested with multiple linear regression modeling using the total score as a target variable. When considering only the 10 NDI subscales, only a single factor emerged, with an eigenvalue of 5.4, explaining 53.7% of the total variance. Strong correlation (> .55) (P Multiple linear regression modeling revealed high internal consistency with all coefficients reaching significance (P < .0001). The 4 NDI subscales exerting the greatest effect were, in decreasing order, Sleeping, Lifting, Headaches, and Pain Intensity. A 2-factor model of the NDI is not justified based on our results, and in this population of whiplash subjects, the NDI was unidimensional, demonstrating high internal consistency and supporting the original validation study of Vernon and Mior.
Dixon-Ibarra, Alicia; Nery-Hurwit, Mara; Driver, Simon; MacDonald, Megan
The Health Education for Persons with Multiple Sclerosis (HEMS) program was developed in response to the need for interventions aimed at increasing physical activity for individuals with Multiple Sclerosis (MS). It was developed and evaluated using Drum and colleagues (2009) guidelines for implementing health promotion programs for individuals with disabilities. The purpose of this feasibility study is to describe the development, implementation, and evaluation of the HEMS program. Thirteen individuals with MS completed the 8-week health education program. A mixed method approach for evaluation was implemented (i.e., survey and focus groups). Process and resource feasibility demonstrated that over half of the participants attended at least 80% of the weekly sessions. Focus group data provided valuable feedback for future iterations of the program including critiques on the delivery, content, and group support provided. Outcome evaluation showed increases in self-efficacy (survey), improvements in theoretical constructs (focus groups), and increased physical activity (focus groups). Results show that health promotion programs for persons with MS can improve physical activity and related constructs. Next steps will be to revise, implement, and reevaluate the HEMS program in a larger randomized control trial. Published by Elsevier Ltd.
López-Larrosa, Silvia; González-Seijas, Rosa M; Carpenter, John S W
The Unique Minds Program (Stern, Unique Minds Program, 1999) addresses the socio-emotional needs of children with learning disabilities (LD) and their families. Children and their parents work together in a multiple family group to learn more about LD and themselves as people with the capacity to solve problems in a collaborative way, including problems in family school relationships. This article reports the cultural adaptation of the program for use in Spain and findings from a feasibility study involving three multiple family groups and a total of 15 children and 15 mothers, using a pre-post design. This Spanish adaptation of the program is called "Mentes Únicas". Standardized outcome measures indicated an overall statistically significant decrease in children's self-rated maladjustment and relationship difficulties by the end of the program. Improvements were endorsed by most mothers, although they were not always recognized by the children's teachers. The program had a high level of acceptability: Mothers and children felt safe, understood, and helped throughout the sessions. The efficacy of the adapted intervention for the context of Spain remains to be tested in a more rigorous study. © 2016 Family Process Institute.
Greathead, Scot; Yates, Rhiannon; Hill, Vivian; Kenny, Lorcan; Croydon, Abigail; Pellicano, Elizabeth
All children have the right to shape decisions that influence their lives. Yet, children with severe-to-profound intellectual disabilities and complex communication needs are often marginalized from this process. Here, we examined the utility of a set of tools incorporating ethnographic and structured observational methods with three such…
Software technology is adopted by the current research to improve the Drag-and-Drop abilities of two people with multiple disabilities and minimal motor control. This goal was realized through a Dynamic Drag-and-Drop Assistive Program (DDnDAP) in which the complex dragging process is replaced by simply poking the mouse wheel and clicking. However,…
Weiland, Tracey J; Hadgkiss, Emily J; Jelinek, George A; Pereira, Naresh G; Marck, Claudia H; van der Meer, Dania M
Modifiable lifestyle factors represent important targets for preventive intervention in multiple sclerosis (MS). We aimed to explore the association of cigarette smoking and alcohol consumption with major MS morbidity outcomes. We surveyed a large, international sample of people with MS recruited via Web 2.0 platforms about type of MS, relapse rates, disability, disease activity, health-related quality of life (HRQOL), alcohol use and smoking. Of 2469 respondents with confirmed MS, 11.7% were current and 40.3% former smokers. Most (61.5%) consumed less than 15 g alcohol weekly; few (0.8%) drank large amounts. Moderate alcohol consumption was associated with increased HRQOL; and after controlling for age and gender, was associated with lower odds of significant disability (41% decrease). After controlling for age, gender and alcohol use, smokers had an increased likelihood of major mobility requirements by 90% compared to never smokers. There was no association between alcohol or smoking and relapse rate or disease activity after controlling for age and gender, however among former smokers, a longer duration of smoking cessation was associated with reduced disease activity. Smokers had significantly lower HRQOL than never smokers and former smokers; heavier smoking was associated with greater decreases in HRQOL. This cross-sectional study supports previous research showing a link between morbidity indicators in MS and alcohol use and smoking. While people with MS should be advised of the potential risks of smoking, any risks and benefits of alcohol consumption require validation using a prospective cohort of people with MS. © 2013.
... an autism spectrum disorder. Low birthweight , premature birth, multiple birth, and infections during pregnancy are associated with an increased risk for many developmental disabilities. Untreated newborn jaundice (high levels of bilirubin in ...
Evaluation of a methodology for a collaborative multiple source surveillance network for autism spectrum disorders--Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2002.
Van Naarden Braun, Kim; Pettygrove, Sydney; Daniels, Julie; Miller, Lisa; Nicholas, Joyce; Baio, Jon; Schieve, Laura; Kirby, Russell S; Washington, Anita; Brocksen, Sally; Rahbar, Hossein; Rice, Catherine
Autism spectrum disorders (ASDs) encompass a spectrum of conditions, including autistic disorder; pervasive developmental disorders, not otherwise specified (PDD-NOS); and Asperger disorder. Impairments associated with ASDs can range from mild to severe. In 2000, in response to increasing public heath concern regarding ASDs, CDC established the Autism and Developmental Disabilities Monitoring (ADDM) Network. The primary objective of this ongoing surveillance system is to track the prevalence and characteristics of ASDs in the United States. ADDM data are useful to understand the prevalence of ASDs and have implications for improved identification, health and education service planning, and intervention for children with ASDs. Because complete, valid, timely, and representative prevalence estimates are essential to inform public health responses to ASDs, evaluating the effectiveness and efficiency of the ADDM methodology is needed to determine how well these methods meet the network's objective. 2002. The ADDM Network is a multiple-source, population-based, active system for monitoring ASDs and other developmental disabilities. In 2002, data were collected from 14 collaborative sites. This report describes an evaluation conducted using guidelines established by CDC for evaluating public health surveillance systems and is based on examination of the following characteristics of the ADDM Network surveillance system: simplicity, flexibility, data quality, acceptability, representativeness, sensitivity, predictive value positive (PVP), timeliness, stability, data confidentiality and security, and sources of variability. Using multiple sources for case ascertainment strengthens the system's representativeness, sensitivity, and flexibility, and the clinician review process aims to bolster PVP. Sensitivity and PVP are difficult to measure, but the ADDM methodology provides the best possible estimate currently available of prevalence of ASDs without conducting complete
Billings, Rebecca L.; Hauser, Stuart T.; Allen, Joseph P.
Participants (n = 36) with consistent Pre-conformist ego development levels during multiple adolescent assessments were studied to determine whether and how their ego levels had changed at age 25. Those (n = 12) whose ego levels remained at the Pre-conformist level were assigned to a "life-course-persistent profound ego development arrest"…
Lynch, Michael P.; And Others
Eight profoundly hearing-impaired children, aged 5-11, received tactual word recognition training with tactual speech perception aids. Following training, subjects were tested on trained words and new words. Performance was significantly better on both sets of words when words were presented with a combined condition of tactual aid and aided…
Describes the profound learning that took place at the International Children's Theatre Festival in Toyama City, Japan in July 2000. Argues that participation by the Japanese-American Drama Ensemble, a youth group from the public schools in Lexington, Massachusetts, and more than 400 children from all over the planet, showcased the cultural…
Cipani, Ennio; And Others
The study was designed to modify the stair climbing behavior of two profoundly retarded residents through backward shaping with graduated guidance, edible rewards, a correction procedure, and a 30 second timeout. Both residents showed an increase in the number of correct steps used while ascending the stairs.
Poole, Marilyn R.; And Others
Provided are sample lesson plans for a program to develop pre-language skills in profoundly retarded children and adults. Characteristic of the suggested activities is the stimulation of all sensory channels through structured infant-like play activities in five general areas: oral stimulation, sensory arousal, motor stimulation, vocal play, and…
At the end of six weeks feeding period, blood samples were obtained and total leukocyte count was done. The results of total court show that animals fed in protein supplemented diet had a profound increase in their leukocyte court when compered with the control. The study shows that specific dietary elements can induce ...
Fernández-Muñoz, J J; Morón-Verdasco, A; Cigarán-Méndez, M; Muñoz-Hellín, E; Pérez-de-Heredia-Torres, M; Fernández-de-las-Peñas, C
To examine the associations between function, quality of life, personality, cognitive and psychological outcomes with fatigue in patients with MS. One hundred and eight patients (54% women) with definite MS participated. MS-related fatigue was assessed with the Fatigue Impact Scale (FIS). Demographic and clinical data (weight, height, medication and history of pain), specific disease outcomes (Functional Assessment of Multiple Sclerosis/FAMS), general disease outcomes (Beck Depression Inventory/BDI-II, and Short-Form Health Survey 36/SF-36) and personality (NEO Five-Factor Inventory/NEOFFI) were assessed. Correlation and regression analyses were performed to determine associations between variables. A significant positive correlation existed between the FIS and EDSS (r=0.190; Ppersonality (NEOFFI neuroticism: r=-0.39, P<0.01; agreeableness: r=-0.206, P<0.05; conscientiousness: r=-0.279, P<0.01) were also observed. Stepwise regression analyses revealed that FAMS thinking/fatigue, physical function (SF-36) and FAMS emotional well-being explained 62.5% of the variance in fatigue (r2=0.652; r2 adjusted=0.625; F=23.774; P<0.001). This study indicates that MS-related fatigue shows an impact on physical, cognitive and emotional aspects in this population. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
Ziegler, Alban; Loundon, Natalie; Jonard, Laurence; Cavé, Hélène; Baujat, Geneviève; Gherbi, Souad; Couloigner, Vincent; Marlin, Sandrine
To highlight Noonan syndrome as a clinically recognizable cause of severe to profound sensorineural hearing impairment. New clinical cases and review. Patients evaluated for etiological diagnosis by a medical geneticist in a reference center for hearing impairment. Five patients presenting with confirmed Noonan syndrome and profound sensorineural hearing impairment. Diagnostic and review of the literature. Five patients presented with profound sensorineural hearing impairment and molecularly confirmed Noonan syndrome. Sensorineural hearing impairment has been progressive for three patients. Cardiac echography identified pulmonary stenosis in two patients and was normal for the three other patients. Short stature was found in two patients. Mild intellectual disability was found in one patient. Inconspicuous clinical features as facial dysmorphism, cryptorchidism, or easy bruising were of peculiar interest to reach the diagnosis of Noonan syndrome. Profound sensorineural hearing impairment can be the main feature of Noonan syndrome. Associated features are highly variable; thus, detailed medical history and careful physical examination are mandatory to consider the diagnosis in case of a sensorineural hearing impairment.
Eye movement desensitisation and reprocessing therapy for posttraumatic stress disorder in a child and an adolescent with mild to borderline intellectual disability: A multiple baseline across subjects study.
Mevissen, Liesbeth; Didden, Robert; Korzilius, Hubert; de Jongh, Ad
This study explored the effectiveness of eye movement desensitisation and reprocessing (EMDR) therapy for post-traumatic stress disorder (PTSD) in persons with mild to borderline intellectual disability (MBID) using a multiple baseline across subjects design. One child and one adolescent with MBID, who met diagnostic criteria for PTSD according to a PTSD clinical interview (i.e., ADIS-C PTSD section), adapted and validated for this target group, were offered four sessions of EMDR. PTSD symptoms were measured before, during and after EMDR, and at six weeks follow-up. For both participants, number of PTSD symptoms decreased in response to treatment and both no longer met PTSD criteria at post-treatment. This result was maintained at 6-week follow-up. The results of this study add further support to the notion that EMDR can be an effective treatment for PTSD in children and adolescents with MBID. Replication of this study in larger samples and using a randomized controlled design is warranted. © 2017 John Wiley & Sons Ltd.
Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Oliva, Doretta; Campodonico, Francesca
This study assessed whether a girl and a woman with multiple disabilities could (a) make phone contacts with relevant partners through a special telephone technology, and (b) enjoy their telephone-mediated communication with them. The technology involved a net-book computer, a global system for mobile communication modem (GSM), an optic microswitch, and specific software. The technology was programmed to present the names of the partners available for contact, and the participants could choose at each presentation sequence the one they wanted to contact with a simple microswitch response. Such response triggered the computer to place a phone call to that partner. Both participants (a) learned to use the technology quite rapidly to contact relevant partners and maintained the successful use of it over the intervention and post-intervention sessions, (b) showed high levels of indices of happiness during the phone calls as opposed to pre-baseline control sessions, and (c) showed preferences among the partners. Implications of the findings are discussed. Copyright © 2013 Elsevier Ltd. All rights reserved.
Hayward, Denyse V; Ritter, Kathryn; Mousavi, Amin; Vatanapour, Shabnam
To report on the Phase 2 development of the Sound Access Parent Outcomes Instrument (SAPOI), a new instrument focused on formalizing outcomes that parents of children with severe multiple disabilities (SMD) who use amplification prioritize as important. Phase 2 of this project involved item selection and refinement of the SAPOI based on (a) Phase 1 study participant input, (b) clinical specialist feedback, and (c) test-retest instrument reliability. Phase 1 participant responses were utilized to construct a draft version of the SAPOI. Next, clinical specialists examined the instrument for content validity and utility and instrument reliability was examined through a test-retest process with parents of children with SMD. The draft SAPOI was constructed based on Phase 1 participant input. Clinical specialists supported content validity and utility of the instrument and the inclusion of 19 additional items across four categories, namely Child Affect, Child Interaction, Parent Well-being, and Child's Device Use. The SAPOI was completed twice at one-month intervals by parents of children with SMD to examine instrument reliability across the four categories (Child Affect, Child Interaction, Parent Well-being, and Child's Device Use). Instrument reliability was strong-to-excellent across all four sections. The SAPOI shows promise as a much-needed addition to the assessment battery currently used for children with SMD who use cochlear implants and hearing aids. It provides valuable information regarding outcomes resulting from access to sound in this population that currently used assessments do not identify.
This paper discusses a way of thinking about disability which has emerged out of the UK Disabled People's Movement over the last three decades in opposition to the preceding medical model of disability which viewed disability as synonymous with problem. Disabled people are increasingly challenging the notion that their embodiment is inherently…
Bonzano, L; Tacchino, A; Roccatagliata, L; Sormani, M P; Mancardi, G L; Bove, M
Sequence learning can be investigated by serial reaction-time (SRT) paradigms. Explicit learning occurs when subjects have to recognize a test sequence and has been shown to activate the frontoparietal network in both contralateral and ipsilateral hemispheres. Thus, the left and right superior longitudinal fasciculi (SLF), connecting the intra-hemispheric frontoparietal circuits, could have a role in explicit unimanual visuomotor learning. Also, as both hemispheres are involved, we could hypothesize that the corpus callosum (CC) has a role in this process. Pathological damage in both SLF and CC has been detected in patients with Multiple Sclerosis (PwMS), and microstructural alterations can be quantified by Diffusion Tensor Imaging (DTI). In light of these findings, we inquired whether PwMS with minimal disability showed impairments in explicit visuomotor sequence learning and whether this could be due to loss of white matter integrity in these intra- and inter-hemispheric white matter pathways. Thus, we combined DTI analysis with a modified version of SRT task based on finger opposition movements in a group of PwMS with minimal disability. We found that the performance in explicit sequence learning was significantly reduced in these patients with respect to healthy subjects; the amount of sequence-specific learning was found to be more strongly correlated with fractional anisotropy (FA) in the CC (r=0.93) than in the left (r=0.28) and right SLF (r=0.27) (p for interaction=0.005 and 0.04 respectively). This finding suggests that an inter-hemispheric information exchange between the homologous areas is required to successfully accomplish the task and indirectly supports the role of the right (ipsilateral) hemisphere in explicit visuomotor learning. On the other hand, we found no significant correlation of the FA in the CC and in the SLFs with nonspecific learning (assessed when stimuli are randomly presented), supporting the hypothesis that inter
Khare, M; Singh, Av; Zamboni, P
Multiple sclerosis (MS) is an autoimmune neurological disorder, which has impacted health related quality of life (HRQoL) more intensively than any other neurological disorder. The approaches to improve the health standard in MS patient are still a subject of primary importance in medical practice and seek a lot of experimental exploration. The present review briefly explains the anomaly in neuron anatomy and dysfunction in signal transmission arising in the context with the chronic cerebrospinal venous insufficiency (CCSVI), a recent hypothesis related with MS pathophysiology. Subsequently, it insights brain-machine interface (BMI) as an alternative approach to improve the HRQoL of MS subjects. Information sources were searched from peer-reviewed data bases (Medline, BioMed Central, PubMed) and grey-literature databases for data published in 2000 or later. We also did systemic search in edited books, articles in seminar papers, reports extracted from newspapers and scientific magazines, articles accessed from internet; mostly using PubMed, Google search engine and Wikipedia. Out of approximately 178, 240 research articles obtained using selected keywords, those articles were included in the present study which addresses the latest definitions of HRQol and latest scientific and ethical developments in the research of MS and BMI. The article presented a brief survey of CCSVI mediated MS and BMI-approach as a treatment to serve the patients suffering from disabilities as a result of MS, followed by successful precedence of BMI approach. Apart from these, the major findings of selected research articles including the development of parameters to define HRQoL, types and development of BMIs and its role in interconnecting brain with actuators, along with CCSVI being a possible cause of MS have formed the foundations to conclude the findings of the present review article. We propose a perspective BMI approach and promises it holds for future research to improve HRQoL in
Gottlieb, Carissa A; Maenner, Matthew J; Cappa, Claudia; Durkin, Maureen S
Child disability is an emerging global health priority. To address the need for internationally comparable information about the frequency and situation of children with disabilities, UNICEF has recommended that countries include the Ten Questions screen for disability in the Multiple Indicator Cluster Survey (MICS) programme. We examined child disability screening and its association with nutrition and early learning in countries with low and middle incomes. Cross-sectional data for the percentage of children screening positive for or at risk of disability were obtained for 191 199 children aged 2-9 years in 18 countries participating in the third round of MICS in 2005-06. Screening results were descriptively analysed according to sociodemographic, nutritional, early-learning, and schooling variables. We constructed a weighted analysis to account for the sampling design in every country and tested for differences within countries using chi(2) analyses. A median 23% (range 3-48) of children aged 2-9 years screened positive for disability in the 18 participating countries. For children aged 2-4 years, screening positive for disability was significantly more likely in children who were not breastfed versus those who were (median 36% [9-56] vs 26% [4-51]) in eight of 18 countries, in children who had not received vitamin A supplementation versus those who had (36% [7-53] vs 29% [4-50]) in five of ten countries assessed, in children who met criteria for stunting (26% [6-54]) or being underweight (36% [3-61]) versus those who did not (25% [3-42] and 26% [4-43], respectively) in five of 15 countries assessed for stunting and in seven of 15 countries assessed for being underweight, and in those who participated in few early-learning activities versus others (31% [7-54] vs 24% [4-51]) in eight of 18 countries. Children aged 6-9 years who did not attend school screened positive for disability more often than did children attending school (29% [2-83] vs 22% [3-47]) in eight
Hendriks, Sanne M; Spijker, Jan; Licht, Carmilla M M; Beekman, Aartjan T F; Hardeveld, Florian; de Graaf, Ron; Batelaan, Neeltje M; Penninx, Brenda W J H
This study compares disability levels between different anxiety disorders and healthy controls. We further investigate the role of anxiety arousal and avoidance behaviour in disability, and whether differences in these symptom patterns contribute to disability differences between anxiety disorders. Data were from 1826 subjects from the Netherlands Study of Depression and Anxiety (NESDA). The Composite Interview Diagnostic Instrument was used to diagnose anxiety disorders. The World Health Organization Disability Assessment Schedule II was used to measure disability in six domains (cognition, mobility, selfcare, social interaction, life activities, participation). Severity of anxiety arousal and avoidance behaviour symptoms was measured using the Beck Anxiety Inventory and the Fear Questionnaire. All anxiety disorders were associated with higher disability. Disability was generally highest in multiple anxiety disorder (e.g. mean disability in cognition=33.7) and social anxiety disorder (mean=32.7), followed by generalized anxiety disorder (mean=27.2) and panic disorder with agoraphobia (mean=26.3), and lowest in panic disorder without agoraphobia (mean=22.1). Anxiety arousal was more associated with disability in life activities (B=8.5, panxiety disorders were not completely explained by anxiety arousal and avoidance behaviour. The cross-sectional study design precludes any causal interpretations. In order to examine the full range of comorbidity among anxiety, a greater range of anxiety disorders would have been preferable. Disability is highest in social anxiety disorder and multiple anxiety disorder. Both anxiety arousal and avoidance behaviour are associated with higher disability levels but do not fully explain the differences across anxiety disorders. Copyright © 2014 Elsevier B.V. All rights reserved.
Armitage, I M; Burke, J. P.; Buffin, J T
The frequency of reversible and irreversible visual impairment was determined in children with severe and profound sensorineural deafness, as subnormal vision can adversely affect their educational and social development. Eighty three of 87 such children attending an audiology service were examined to assess the incidence and severity of visual impairment. Each child underwent a detailed ophthalmic assessment. The criteria for visual impairment were visual acuity < 6/9 Snellen or equivalent a...
Moore, Paul A; Salas, Christian E; Dockree, Suvi; Turnbull, Oliver H
Individuals with profound amnesia are markedly impaired in explicitly recalling new episodic events, but appear to preserve the capacity to use information from other sources. Amongst these preserved capacities is the ability to form new memories of an emotional nature - a skill at the heart of developing and sustaining interpersonal relationships. The psychoanalytic study of individuals with profound amnesia might contribute to the understanding the importance of each memory system, including effects on key analytic processes such as transference and countertransference. However, psychoanalytic work in the presence of profound amnesia might also require important technical modifications. In the first report of its kind, we describe observations from a long term psychoanalytic process (72 sessions) with an individual (JL) who has profound amnesia after an anoxic episode. The nature of therapy was shaped by JL's impairment in connecting elements that belong to distant (and even relatively close) moments in the therapeutic process. However, we were also able to document areas of preservation, in what appears to be a functioning therapeutic alliance. As regards transference, the relationship between JL and his analyst can be viewed as the evolution of a narcissistic transference, and case material is provided that maps this into three phases: (i) rejecting; (ii) starting to take in; and (iii) full use of the analytic space - where each phase exhibits differing degrees of permeability between JL and the analyst. This investigation appears to have important theoretical implications for psychoanalytic practice, and for psychotherapy in general - and not only with regard to brain injured populations. We especially note that it raises questions concerning the mechanism of therapeutic action in psychoanalysis and psychotherapy, and the apparent unimportance of episodic memory for many elements of therapeutic change.
Samaan, M Constantine; Murphy, Nuala; Costigan, Colm
A previously well 5-year-old girl presented with new onset type 1 diabetes mellitus and diabetic ketoacidosis, and was found to be profoundly hyperlipidaemic. Further investigations showed that she had associated hypothyroidism. She responded to insulin and L-thyroxine treatments and her lipid profile returned to normal 2 months after diagnosis. Despite starting anticoagulant therapy early, she developed deep vein thrombosis of the lower limb. Her family screen did not demonstrate familial hy...
Moore, Paul A.; Salas, Christian E.; Dockree, Suvi; Turnbull, Oliver H.
Individuals with profound amnesia are markedly impaired in explicitly recalling new episodic events, but appear to preserve the capacity to use information from other sources. Amongst these preserved capacities is the ability to form new memories of an emotional nature – a skill at the heart of developing and sustaining interpersonal relationships. The psychoanalytic study of individuals with profound amnesia might contribute to the understanding the importance of each memory system, including effects on key analytic processes such as transference and countertransference. However, psychoanalytic work in the presence of profound amnesia might also require important technical modifications. In the first report of its kind, we describe observations from a long term psychoanalytic process (72 sessions) with an individual (JL) who has profound amnesia after an anoxic episode. The nature of therapy was shaped by JL’s impairment in connecting elements that belong to distant (and even relatively close) moments in the therapeutic process. However, we were also able to document areas of preservation, in what appears to be a functioning therapeutic alliance. As regards transference, the relationship between JL and his analyst can be viewed as the evolution of a narcissistic transference, and case material is provided that maps this into three phases: (i) rejecting; (ii) starting to take in; and (iii) full use of the analytic space – where each phase exhibits differing degrees of permeability between JL and the analyst. This investigation appears to have important theoretical implications for psychoanalytic practice, and for psychotherapy in general – and not only with regard to brain injured populations. We especially note that it raises questions concerning the mechanism of therapeutic action in psychoanalysis and psychotherapy, and the apparent unimportance of episodic memory for many elements of therapeutic change. PMID:28890703
Paul A. Moore
Full Text Available Individuals with profound amnesia are markedly impaired in explicitly recalling new episodic events, but appear to preserve the capacity to use information from other sources. Amongst these preserved capacities is the ability to form new memories of an emotional nature – a skill at the heart of developing and sustaining interpersonal relationships. The psychoanalytic study of individuals with profound amnesia might contribute to the understanding the importance of each memory system, including effects on key analytic processes such as transference and countertransference. However, psychoanalytic work in the presence of profound amnesia might also require important technical modifications. In the first report of its kind, we describe observations from a long term psychoanalytic process (72 sessions with an individual (JL who has profound amnesia after an anoxic episode. The nature of therapy was shaped by JL’s impairment in connecting elements that belong to distant (and even relatively close moments in the therapeutic process. However, we were also able to document areas of preservation, in what appears to be a functioning therapeutic alliance. As regards transference, the relationship between JL and his analyst can be viewed as the evolution of a narcissistic transference, and case material is provided that maps this into three phases: (i rejecting; (ii starting to take in; and (iii full use of the analytic space – where each phase exhibits differing degrees of permeability between JL and the analyst. This investigation appears to have important theoretical implications for psychoanalytic practice, and for psychotherapy in general – and not only with regard to brain injured populations. We especially note that it raises questions concerning the mechanism of therapeutic action in psychoanalysis and psychotherapy, and the apparent unimportance of episodic memory for many elements of therapeutic change.
Croft, Gillian; Boyer, Wanda; Hett, Geoffrey
Although every child with disabilities may come to self-actualization by different means and measurements it is, nevertheless, an important goal. The child with disabilities may be guided toward her goal of self-actualization by being encouraged to find her individual strengths and capacities, and by being assisted to successfully interact with…
Development of the visual system typically proceeds in concert with the development of audition. One result is that the visual system of profoundly deaf individuals differs from that of those with typical auditory systems. While past research has suggested deaf people have enhanced attention in the visual periphery, it is still unclear whether or not this enhancement entails deficits in central vision. Profoundly deaf and typically hearing adults were administered a variant of the useful field of view task that independently assessed performance on concurrent central and peripheral tasks. Identification of a foveated target was impaired by a concurrent selective peripheral attention task, more so in profoundly deaf adults than in the typically hearing. Previous findings of enhanced performance on the peripheral task were not replicated. These data are discussed in terms of flexible allocation of spatial attention targeted towards perceived task demands, and support a modified “division of labor” hypothesis whereby attentional resources co-opted to process peripheral space result in reduced resources in the central visual field. PMID:26657078
Olives, Travis D; Nystrom, Paul C; Cole, Jon B; Dodd, Kenneth W; Ho, Jeffrey D
Profound agitation in the prehospital setting confers substantial risk to patients and providers. Optimal chemical sedation in this setting remains unclear. The goal of this study was to describe intubation rates among profoundly agitated patients treated with prehospital ketamine and to characterize clinically significant outcomes of a prehospital ketamine protocol. This was a retrospective cohort study of all patients who received prehospital ketamine, per a predefined protocol, for control of profound agitation and who subsequently were transported to an urban Level 1 trauma center from May 1, 2010 through August 31, 2013. Identified records were reviewed for basic ambulance run information, subject characteristics, ketamine dosing, and rate of intubation. Emergency Medical Services (EMS) ambulance run data were matched to hospital-based electronic medical records. Clinically significant outcomes are characterized, including unadjusted and adjusted rates of intubation. Overall, ketamine was administered 227 times in the prehospital setting with 135 cases meeting study criteria of use of ketamine for treatment of agitation. Endotracheal intubation was undertaken for 63% (85/135) of patients, including attempted prehospital intubation in four cases. Male gender and late night arrival were associated with intubation in univariate analyses (χ2=12.02; P=.001 and χ2=5.34; P=.021, respectively). Neither ketamine dose, co-administration of additional sedating medications, nor evidence of ethanol (ETOH) or sympathomimetic ingestion was associated with intubation. The association between intubation and both male gender and late night emergency department (ED) arrival persisted in multivariate analysis. Neither higher dose (>5mg/kg) ketamine nor co-administration of midazolam or haloperidol was associated with intubation in logistic regression modeling of the 120 subjects with weights recorded. Two deaths were observed. Post-hoc analysis of intubation rates suggested a
Rask, Mette T; Rosendal, Marianne; Fenger-Grøn, Morten; Bro, Flemming; Ørnbøl, Eva; Fink, Per
The objective was to explore patient characteristics and 10-year outcome of sick leave and work disability for patients with recent-onset multiple medically unexplained symptoms (MUS) and persistent somatoform disorders (SD). Consecutive patients consulting their family physician (FP) completed a preconsultation questionnaire on symptoms and mental illness (n=1785). The main problem was categorized by the FP after the consultation, and a stratified subsample was examined using a standardized diagnostic interview (n=701). Patients were grouped into three cohorts: recent onset of multiple MUS (n=84); Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, persistent SD (n=183); and reference group with well-defined physical disease according to FP (n=833). Register data on sick leave and disability pension were obtained. At index consultation, disability pension was received by 8.3% (n=7) in the recent-onset multiple MUS group, 19.1% (n=35) in the SD group and 3.5% (n=29) in the reference group. Both the recent-onset multiple MUS group [hazard ratio (HR)=2.28, 95% confidence interval (CI): 1.14-4.55] and the SD group (HR=3.26, 95% CI:1.93-5.51) had increased risk of new disability pension awards. Furthermore, the SD group had increased risk of sick leave. Both recent-onset and persistent MUS have significant long-term impact on patient functioning in regard to working life; this calls for early recognition and adequate management of MUS in primary care. Copyright © 2014 The Author. Published by Elsevier Inc. All rights reserved.
Evenhuis, H.M.; Sjoukes, L.; Koot, H.M.; Kooijman, A.C.
Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with
Multiple Sclerosis; Fatigue; Mental Status Change; Physical Disability; Physical Activity; Mental Impairment; Quality of Life; Disabilities Psychological; Disability Physical; Pain; Energy Supply; Deficiency; Motivation