Perceived and physiological strains of societal participation in people with multiple sclerosis: a real-time assessment study.

OBJECTIVE: To examine the relationship between perceived and physiological strains of real-time societal participation in people with multiple sclerosis. DESIGN: Observational study. SUBJECTS/PATIENTS: 70 people with multiple sclerosis. METHODS: Perceived and physiological strain of societal participation (10 participation-at-location and 9 transport domains) were measured in real time using the Whereabouts smartphone app and Fitbit over 7 consecutive days. Longitudinal relationships between perceived (1 not strenuous to 10 most strenuous) and physiological strains (heart rate reserve) were examined using mixed-model analyses. Type of event (participation-at-location or transport) was added as covariate, with further adjustments for fatigue and walking ability. RESULTS: Median perceived strain, summarized for all societal participation domains, varied between 3 and 6 (range: 1-10), whereas physiological strain varied between 18.5% and 33.2% heart rate reserve. Perceived strain (outcome) and physiological strain were not associated (ß -0.001, 95%CI -0.008; 0.005, with a 7-day longitudinal correlation coefficient of -0.001). Transport domains were perceived as less strenuous (ß -0.80, 95%CI -0.92; -0.68). Higher fatigue levels resulted in higher perceived strain (all societal participation domains) (ß 0.05, 95%CI 0.02; 0.08). CONCLUSION: Societal participation resulted in low-to-moderate perceived and physiological strain. Perceived and physiological strain of societal participation were unrelated and should be considered different constructs in multiple sclerosis.

A Smartphone Application to Assess Real-Time and Individual-Specific Societal Participation: A Development and Usability Study.

OBJECTIVE: To develop a mobile health app to assess individual-specific meaningful societal participation in real time and to evaluate its usability. DESIGN: Development and usability study. SETTING: General community. PARTICIPANTS: Persons with multiple sclerosis (PwMS) utilized the app for 7 consecutive days. In total, 72 PwMS and smartphone owners were included in the analysis (N=72). INTERVENTIONS: Using location tracking, the newly developed Whereabouts app generates an individual-specific timeline of societal participation activities each day, consisting of location and transportation intervals. Subsequently, this timeline is real time enriched by the user with self-reported ratings of meaningfulness and perceived strain of these societal participation activities. The app is based on the International Classification of Functioning, Disability and Health and was developed in an iterative process. MAIN OUTCOME MEASURE(S): Usability of the newly developed Whereabouts app was evaluated by analyzing the effectiveness, efficiency, and user satisfaction. RESULTS: Regarding effectiveness, the app correctly assessed the type, frequency, and duration of different societal participation activities for 96.1% of the participation activities. The self-reported ratings of societal participation varied for meaningfulness (range, 5-8), perceived strain (range, 2-6), and meaningfulness of the perceived strain (range, 5-8). The latter 2 were highly correlated (r=0.857). With regards to efficiency, 3.9% of the generated participation activities had to be excluded due to inaccuracy or incompleteness. Relating to user satisfaction, 57.3% of PwMS reported that they were satisfied with the usability of the app and 59.7% stated that it gave a realistic overview of their daily activities. However, 54.4% PwMS missed the possibility to specify activities at home, to add activities in more detail, and to correct mistakes. CONCLUSIONS: The Whereabouts app demonstrates usability in assessing real-time, individual-specific meaningful societal participation. Improvements are recommended, such as the possibility to specify participation activities and to generate a graphic overview.

Fatigue Profiles in Patients with Multiple Sclerosis are Based on Severity of Fatigue and not on Dimensions of Fatigue.

Fatigue related to Multiple Sclerosis (MS) is considered a multidimensional symptom, manifesting in several dimensions such as physical, cognitive, and psychosocial fatigue. This study investigated in 264 patients with severe primary MS-related fatigue (median MS duration 6.8 years, mean age 48.1 years, 75% women) whether subgroups can be distinguished based on these dimensions. Subsequently, we tested whether MS-related fatigue consists of a single common unidimensional factor. Subscale scores on four self-reported fatigue questionnaires, including the Checklist of Individual Strength, the Modified Fatigue Impact Scale, the Fatigue Severity Scale and the SF36 vitality, were used in a cluster analysis to identify patients with similar fatigue characteristics. Next, all 54 items were included in exploratory factor analysis to test unidimensionality. Study results show that in patients with a treatment indication for primary MS-related fatigue, fatigue profiles are based on severity and not on the various dimensions of fatigue. The three profiles found, suggested one underlying fatigue dimension, but this could not be confirmed. Factor analysis of all 54 items resulted in 8 factors, confirming the multidimensional construct of the included fatigue questionnaires.

Assessing life balance of European people with multiple sclerosis: A multicenter clinimetric study within the RIMS network.

BACKGROUND: Life balance is defined as "a satisfying pattern of daily activity that is healthful, meaningful, and sustainable to an individual within the context of his or her current life circumstances". To assess life balance, the self-report instrument Life Balance Inventory (LBI) has been developed in the US. The aim of this study was to evaluate cross-cultural, construct validity and test-retest reliability of translated versions of the LBI in people with multiple sclerosis (MS) within different European cultures (Dutch, Flemish, Slovenian, and Spanish). METHOD: The LBI was translated according to the principles of forward/backward translation and the cultural adaption process of patient-reported outcomes and evaluated in people with MS in each country/language area. LBI (score range 1-3; higher scores refer to better balance) was registered twice with an interval of 7 days to evaluate test-retest reliability using Intraclass Correlation Coefficients (ICCs) and Bland Altman analyses. To evaluate construct validity, Pearson correlations of the LBI with quality of life, fatigue, depression and self-efficacy were explored. RESULTS: The total sample (n = 313, 50 ± 11 years of age, MS duration 13 ± 8 years) consisted of five subsamples: Dutch (n = 81, 74% women, 54 ± 9.6 years of age), Flemish 1 (n = 42, 57% women, 49 ± 12 years), Flemish 2 (n = 105, 63% women, 50 ± 10.6 years), Slovenian (n = 48, 79% women, 44 ± 11.2 years) and Spanish (n = 37, 62% women, 47 ± 9.0 years). Baseline total LBI scores differed between subsamples (F(4, 312)=7.19, p < 0.001). ICC [95% CI] of total LBI was 0.88 [0.83-0.92] (Flemish 2), 0.65 [0.39-0.82] (Flemish 1), 0.55 [0.37-0.69] (Dutch), 0.45 [0.15-0.67] (Spanish) and 0.35 [0.07-0.59] (Slovenian). Systematic error was present in one sample; no proportional bias occurred. Correlations ranged from 0.05 to 0.55 for quality of life and self-efficacy, from -0.50 to 0.05 for fatigue and from -0.44 to -0.28 for depression, not fully supporting the hypotheses. CONCLUSION: The study results provide limited support for test-retest reliability, cross-cultural and construct validity of the LBI in different European subsamples. Although LBI may serve as a supportive tool in goalsetting in rehabilitation, the current version of LBI is not recommended for (international) research purposes.

Effectiveness of cognitive behavioral therapy for the treatment of fatigue in patients with multiple sclerosis: A systematic review and meta-analysis.

BACKGROUND: Fatigue is a frequently occurring symptom of multiple sclerosis (MS) that limits social participation. OBJECTIVE: To systematically determine the short and long-term effects of cognitive behavioral therapy (CBT) for the treatment of MS-related fatigue. DATA SOURCES: Pubmed, Cochrane, EMBASE, Psychology and Behavioral Sciences Collection, ERIC, PsychINFO, Cinahl, PsycARTICLES, and relevant trial registers were searched up to February 2016. In addition, references from retrieved articles were examined. STUDY SELECTION: Studies were included if participants had MS, fatigue was a primary outcome measure, the intervention was CBT, and the design was a randomized controlled trial. The search was performed by two independent reviewers, three CBT experts determined whether interventions were CBT. DATA EXTRACTION: Data on patient and study characteristics and fatigue were systematically extracted using a standardized data extraction form. Two independent reviewers assessed risk of bias using the Cochrane Collaboration risk of bias tool. In the event of disagreement, a third reviewer was consulted. DATA SYNTHESIS: Of the 994 identified studies, 4 studies were included in the meta-analysis, comprising 193 CBT-treated patients and 210 patients who underwent a control treatment. Meta-analyses of these studies showed that CBT treatment had a positive short-term effect on fatigue (standardized mean difference [SMD]=-0.47; 95% confidence interval [CI]=-0.88; -0.06; I2=73%). In addition, three studies showed a long-term positive effect of CBT (SMD=-0.30; CI -0.51; -0.08; I2=0%). CONCLUSIONS: This review found that the use of CBT for the treatment of fatigue in patients with MS has a moderately positive short-term effect. However, this effect decreases with cessation of treatment.