ABSTRACT
BACKGROUND: People with intellectual disabilities experience inequities in healthcare. Those are maintained by individual limitations as well as environmental factors. In this context, health needs are less likely to be expressed, identified and met. METHOD: We led a survey in 832 adults with intellectual disabilities to identify if health was set as a priority and if so, what were their major health-related support needs (in terms of physical, social and psychological health). RESULTS: 67.1% of participants reported at least one need. Most frequently, two or more types of needs were reported with gender and living facility having an effect on whether participants would report these needs, but these did not affect which type of needs were reported. CONCLUSIONS: Health-related support needs are highly prevalent and diversified in people with intellectual disabilities. This study emphasizes the importance to consider health as a global concept as well as the relationships between health and self-determination.
Subject(s)
Intellectual Disability , Adult , Humans , Intellectual Disability/psychology , Personal Autonomy , Surveys and QuestionnairesABSTRACT
BACKGROUND: Cognitive impairment affects half of the multiple sclerosis (MS) patient population and is an important contributor to patients' daily activities. Most cognitive impairment studies in MS are, however, cross-sectional or/and focused on the early disease stages. OBJECTIVE: We aim to assess the time course of decline of different cognitive domains. METHODS: We collected neuropsychological data on 514 MS patients to construct Kaplan-Meier survival curves of the tests included in the Neuropsychological Screening Battery for MS (NSBMS) and the Symbol Digit Modalities Test (SDMT). Cox-proportional hazard models were constructed to examine the influence of MS onset type, age at onset, gender, depression and level of education on the time course, expressed as age or disease. RESULTS: Survival curves of tests focusing on information processing speed (IPS) declined significantly faster than tests with less specific demands of IPS. Median age for pathological decline was 56.2 years (95% CI: 54.4-58.2) on the SDMT and 63.9 years (95% CI: 60-66.9) on the CLTR, a memory task. CONCLUSION: In conclusion, IPS is the cognitive domain not only most widely affected by MS but it is also the first cognitive deficit to emerge in MS.
Subject(s)
Cognition Disorders/physiopathology , Disease Progression , Multiple Sclerosis/physiopathology , Neuropsychological Tests/statistics & numerical data , Adult , Cognition Disorders/diagnosis , Cognition Disorders/etiology , Female , Humans , Male , Middle Aged , Multiple Sclerosis/complications , Proportional Hazards ModelsABSTRACT
There is a strong and growing focus on self-determination in French-speaking countries, and this pilot study reports the technical adequacy of the Self-Determination Inventory: Student Report (SDI:SR) French Translation. Data were collected with 471 French-speaking youth with and without disabilities in Canada (Quebec), Switzerland, France, and Belgium. Key findings showed it was feasible to use 20 (of 21) items to represent the self-determination construct in the French-speaking sample. The same set of items function in the same way across students with and without disabilities, and students with disabilities descriptively scored lower. Overall, this study provides promising evidence for reliability and validity of the SDI:SR French Translation and suggests ongoing development and larger-scale testing of the SDI:SR French Translation is warranted.
Subject(s)
Personal Autonomy , Humans , Male , Female , Reproducibility of Results , Adolescent , Pilot Projects , Translations , Students/psychology , France , Psychometrics , Switzerland , Belgium , Child , Young Adult , Quebec , Surveys and Questionnaires , Intellectual Disability/psychologyABSTRACT
BACKGROUND: The Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) is a fast, easy-to-administer and already widely validated neuropsychological battery for cognition in multiple sclerosis. OBJECTIVE: The goals of our study were to validate the BICAMS in a Belgian Dutch-speaking population and to investigate to what extent including extensive versions of two of the three BICAMS subtests improved its psychometric qualities. METHODS: Ninety-seven persons with MS and ninety-seven healthy controls were included and group-matched on age, education level and gender. All participants performed the BICAMS with an extensive version of the CVLT-II and BVMT-R. RESULTS: The SDMT and BVMT-R were able to dissociate between the MS and healthy control group, while the CVLT-II was not. Distributions of CVLT-II scores suggest learning effects in the MS group, indicating the need for alternative word lists or the construction of an adapted version fitted for repeated administration. Including the full CVLT-II and BVMT-R did not markedly improve the psychometric qualities of the BICAMS. CONCLUSION: This study validates the BICAMS in a Belgian Dutch-speaking population and facilitates the use of it in clinical practice, while providing evidence that including full versions of the CVLT-II and BVMT-R does not increase its psychometric qualities markedly.
Subject(s)
Multiple Sclerosis/diagnosis , Multiple Sclerosis/psychology , Neuropsychological Tests , Adult , Age Factors , Belgium , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/etiology , Educational Status , Female , Humans , Male , Middle Aged , Multiple Sclerosis/complications , Psychometrics , Regression Analysis , Sex Factors , TranslatingABSTRACT
Taking an active part and responsibilities in one's own life is not always easy, particularly at adolescence, which is a very important period in which people progressively find their identity and life project. This article describes the social validation analyses of a Belgian self-determination curriculum that was adapted from a French-Canadian curriculum. It was done with the participation of adolescents with intellectual disabilities, teachers, and experts from the field. Overall, results indicate a satisfying to very satisfying appreciation of the social utility of the training manual. The findings also highlighted that the curriculum actually supports the conceptual framework of self-determination.
Subject(s)
Curriculum , Intelligence , Personal Autonomy , Persons with Mental Disabilities/rehabilitation , Adolescent , Belgium , Female , Humans , Mainstreaming, Education , Male , Program Evaluation , TeachingABSTRACT
BACKGROUND: Information on the relative influence of cognitive and physical impairment on the quality of life in multiple sclerosis is currently limited and no scientific consensus has been reached yet. OBJECTIVE: For this reason, we wanted to examine the relative contribution of cognitive and physical impairment measures comprised in the MSFC test on quality of life in MS. METHODS: In the National MS Center Melsbroek, patients regularly undergo MSFC and EQ5D measurements. We investigated the correlations between the EQ5D, EQVAS and the MSFC and EDSS scores by the use of ANOVA and multilinear models. RESULTS: We found a significant correlation between the EQVAS score and cognition in a univariate model. When including EDSS score and MSFC outcomes into the model, cognition was, however, excluded based on the Akaike Information Criterion. Cognition was, on the other hand, a significant predictor for the "Usual Activities" question of the EQ5D. CONCLUSIONS: Although cognitive performance as measured on the PASAT-3s does not correlate with a patient's perceived quality of life in a multivariate model, it remains an important predictor for the patient's usual activities.