Predictors of Participation and Autonomy in People With Multiple Sclerosis.

IMPORTANCE: Because multiple sclerosis (MS) affects many life areas, it is important to know how participation and autonomy are associated with the perceived impact of MS on everyday life. OBJECTIVE: To investigate how perceived quality of life, disease impact, gender, and disease severity predict participation and autonomy in people with MS. DESIGN: Cross-sectional study in which structural equation modeling was used to evaluate relationships between measured variables. SETTINGS: Outpatient clinics in three areas and one inpatient rehabilitation center in Finland. PARTICIPANTS: Convenience sample of 194 people with MS. OUTCOMES AND MEASURES: Participants completed the Impact on Participation and Autonomy (IPA), the World Health Organization Quality of Life-Brief measure (WHOQOL-BREF), and the Multiple Sclerosis Impact Scale (MSIS-29). The Expanded Disability Status Scale (EDSS) was administered by a neurologist. RESULTS: The final model showed good fit to the data. All the goodness-of-fit indexes except χ² supported the model, χ²(30, N = 194) = 46.729, p < .026; comparative fit index = .983; Tucker-Lewis index = .969; root mean square error of approximation = .054; standardized root mean square residual = .039. Quality of life (WHOQOL-BREF) and the impact of multiple sclerosis (MSIS-29) were the main predictors of participation and autonomy. Disease severity influenced only the IPA Autonomy Indoors domain. Gender was not associated with participation and autonomy. CONCLUSION AND RELEVANCE: Experiences of participation and autonomy appear to be closely associated with perceived quality of life and impact of the disease. Findings support the importance of assessing participation and autonomy and planning interventions using this information. WHAT THIS ARTICLE ADDS: The IPA appears to be an appropriate measure for assessing participation and autonomy and planning occupational therapy interventions for people with MS. In particular, environmental factors affecting participation and autonomy should be considered when planning interventions to promote participation and autonomy.

Psychometric evaluation of the Finnish version of the impact on participation and autonomy questionnaire in persons with multiple sclerosis.

OBJECTIVE: The objective of this study was to evaluate the psychometric properties of the impact on participation and autonomy (IPA) questionnaire. The Finnish version of IPA (IPAFin) was translated into Finnish using the protocol for linguistic validation for patient-reported outcomes instruments. METHODS: A total of 194 persons with multiple sclerosis (MS) (mean age 50 years SD 9, 72% female) with moderate to severe disability participated in this study. A confirmatory factor analysis (CFA) was used to confirm the four factor structure of the IPAFin. The work and educational opportunities domain was excluded from analysis, because it was only applicable to 51 persons. Internal consistency was investigated by calculating Cronbach's alpha. RESULTS: CFA confirmed the construct validity of the IPA (standardized root mean square residual (SRMR) = 0.06, comparative fit index (CFI) = 0.93, Tucker-Lewis index =0.93, root mean square error of approximation (RMSEA) = 0.06), indicating a good fit to the model. There was no difference in the models for females and males. Cronbach's alpha for the domains ranged between 0.80 and 0.91, indicating good homogeneity. CONCLUSIONS: The construct validity and reliability of the IPAFin is acceptable. IPAFin is a suitable measure of participation in persons with MS.

Neuropsychological rehabilitation for multiple sclerosis.

BACKGROUND: This is an update of the Cochrane review 'Neuropsychological rehabilitation for multiple sclerosis' (first published in The Cochrane Library 2011, Issue 11).Cognitive deficits are a common manifestation of multiple sclerosis (MS) and have a significant effect on the patient's quality of life. Alleviation of the harmful effects caused by these deficits should be a major goal of MS research and practice.  OBJECTIVES: To assess the effects of neuropsychological/cognitive rehabilitation on health-related factors, such as cognitive performance and emotional well-being in patients with MS. SEARCH METHODS: The Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System Group Trials Search Co-ordinator searched their Specialised Register which, among other sources, contains trials from CENTRAL (The Cochrane Library 2013, Issue 2), MEDLINE, EMBASE, CINAHL, LILACS, PEDro and clinical trials registries (28 May 2013). We contacted authors of the studies for additional information. SELECTION CRITERIA: Randomised controlled trials (RCTs) and quasi-randomised trials evaluating the effects of neuropsychological rehabilitation in MS compared to other interventions or no intervention. DATA COLLECTION AND ANALYSIS: Two review authors individually judged the eligibility of the included studies, assessed risk of bias and extracted data. We combined results quantitatively in meta-analyses according to the intervention type: 1) cognitive training and 2) cognitive training combined with other neuropsychological rehabilitation methods. MAIN RESULTS: Twenty studies (986 participants; 966 MS participants and 20 healthy controls) fulfilled the inclusion criteria. The mean age of the participants was 44.6 years, mean length of education was 12.3 years and 70% of the participants were women. Most of the participants had a relapsing-remitting course of disease. The mean Expanded Disability Status Scale score was 3.2 and the mean duration of disease was 14.0 years.On the basis of these studies, we found low-level evidence that neuropsychological rehabilitation reduces cognitive symptoms in MS. Cognitive training was found to improve memory span (standardised mean difference (SMD) 0.54, 95% confidence interval (CI) 0.20 to 0.88, P = 0.002) and working memory (SMD 0.33, 95% CI 0.09 to 0.57, P = 0.006). Cognitive training combined with other neuropsychological rehabilitation methods was found to improve attention (SMD 0.15, 95% CI 0.01 to 0.28, P = 0.03), immediate verbal memory (SMD 0.31, 95% CI 0.08 to 0.54, P = 0.008) and delayed memory (SMD 0.22, 95% CI 0.02 to 0.42, P = 0.03). There was no evidence of an effect of neuropsychological rehabilitation on emotional functions.The overall quality, as well as the comparability of the included studies, was relatively low due to methodological limitations and heterogeneity of interventions and outcome measures. Although most of the pooled results in the meta-analyses yielded no significant findings, 18 of the 20 studies showed some evidence of positive effects when the studies were individually analysed. AUTHORS' CONCLUSIONS: This review found low-level evidence for positive effects of neuropsychological rehabilitation in MS. The interventions and outcome measures included in the review were heterogeneous, which limited the comparability of the studies. New trials may therefore change the strength and direction of the evidence.

The activities and participation categories of the ICF Core Sets for multiple sclerosis from the patient perspective.

PURPOSE: To validate the activities and participation components of The International Classification of Functioning, Disability and Health (ICF). METHODS: In this cross-sectional study, 113 Finnish community-dwelling persons with MS were assessed using a semi-structured interview provided by the Canadian Occupational Performance Measure (COPM) to capture participants' self-perceived problems in everyday activities and participation. Problems were linked to the ICF categories. RESULTS: Participants identified 527 of the most important occupational performance problems. They covered all chapters of the ICF Activities and Participation components. Forty-one categories out of a total 53 ICF activities and participation categories of the Comprehensive ICF Core Set and four out of five categories of the Brief ICF Core Set were reported on by the participants. The most common category in this sample, 'd920 Recreation and leisure' (145 problems/27.5%), is not included in the Brief ICF Core Set. CONCLUSIONS: Most, but not all, ICF activities and participation categories of the ICF Core Sets for MS could be confirmed from the perspective of persons with MS. It is worth considering to add category 'd920 Recreation and leisure' to the Brief ICF Core Set.

Neuropsychological rehabilitation for multiple sclerosis.

BACKGROUND: Cognitive deficits are a common manifestation in multiple sclerosis (MS) and have a wide effect on the patient's quality of life. Alleviation of the harmful effects caused by these deficits should be a major goal of MS research and practice. OBJECTIVES: The aim of this review was to evaluate the effects of neuropsychological/cognitive rehabilitation in MS by conducting a systematic review. SEARCH METHODS: A systematic literature search was carried out on reports drawn from Cochrane MS Group Specialised Register (To October 2010), Evidence-based medicine (EBM) reviews (To September 2010), MEDLINE (January 1950 to September 2010), EMBASE (1974 to September 2010), PsycINFO (January 1806 to September 2010), WEB OF SCIENCE (WOS) (January 1986 to September 2010), CINAHL (1982 to September 2010), and identified from the references in these reports. SELECTION CRITERIA: Randomised Controlled Trials (RCTs) and quasi-randomised trials evaluating the effects of neuropsychological rehabilitation in MS compared to other interventions or no intervention at all and employing neuropsychological rehabilitation methods and outcome measures were included. DATA COLLECTION AND ANALYSIS: Two review authors individually judged the relevance, risk of bias, and content of the included studies. Results were combined quantitatively with meta-analyses according to the intervention type: 1) Cognitive training and 2) Cognitive training combined with other neuropsychological rehabilitation methods. In addition, narrative presentation was used in reporting the results of those studies which were inappropriate to be included in the meta-analysis. MAIN RESULTS: Fourteen studies (770 MS patients) fulfilled the inclusion criteria. On the basis of these studies, low level evidence was found that neuropsychological rehabilitation reduces cognitive symptoms in MS. Cognitive training was found to improve memory span (standardised mean difference 0.54 (95% confidence interval 0.2 to 0.88, P = 0.002)), working memory (standardised mean difference 0.33 (95% confidence interval 0.09 to 0.57, P = 0.006)), and immediate visual memory (standardised mean difference 0.32 (95% confidence interval 0.04 to 0.6, P = 0.02)). There was no evidence of an effect of cognitive training combined with other neuropsychological rehabilitation methods on cognitive or emotional functions. The overall quality as well as the comparability of the included studies were relatively low due to methodological limitations and heterogeneity of outcome measures. Although most of the pooled results in the meta-analyses yielded no significant findings, twelve of the fourteen studies showed some evidence of positive effects when the studies were individually analysed. AUTHORS' CONCLUSIONS: The review indicates low level evidence for the positive effects of neuropsychological rehabilitation in MS. Interventions included in the review were heterogeneous. Consequently, clinical inferences can basically be drawn from single studies. Therefore, new trials may change the strength and direction of the evidence. To further strengthen the evidence, well-designed high quality studies are needed. In this systematic review, recommendations are given for improving the quality of future studies on the effects of neuropsychological rehabilitation in MS.