Mood Associated With Health- and Social Care-Related Quality of Life in Patients With Advanced Multiple Sclerosis.

BACKGROUND: Individuals with advanced multiple sclerosis (MS) have complex care requirements and are more likely to use long-term facilities. This study determined the associations between mood and social care-related quality of life (SCRQOL), and health-related quality of life (HRQOL) and examined the association between HRQOL and SCRQOL. METHODS: Baseline data from a cohort study were used. Patients completed questionnaires, including the Hospital Anxiety and Depression Scale (HADS), Adult Social Care Outcomes Toolkit (ASCOT), and EuroQOL 5D-5L (EQ-5D-5L) and EQ-Visual Analogue Scale (EQ-VAS). Linear regression analyses were employed to assess the relationships between mood and both outcomes of QOL while controlling for relevant confounding factors (ßs; 95% CI). The cross-sectional association between SCRQOL and HRQOL was examined using Pearson correlation coefficients (r). RESULTS: A total of 75 patients, with a mean age of 56.1 years and a disease duration of 17.3 years, were enrolled from a long-term care facility in the Netherlands. Results showed that after controlling for confounders, HADS is an independent determinant of ASCOT (ßs = -.368; 95% CI, -.581 to -.154) and EQ-5D-5L (ßs = -.297; 95% CI, -.507 to -.087). Also, there are significant but weak correlations between ASCOT and EQ-5D-5L (r = 0.242; 95% CI, .015-.468), between ASCOT and EQ-VAS (r = 0.230; 95% CI, .003-.457) and between EQ-5D-5L and EQ-VAS (r = 0.227; 95% CI, .000-.454). CONCLUSIONS: Mood, especially the depression component, is an important determinant of both HRQOL and SCRQOL in advanced MS. Focusing on mood in health care and social care may contribute to the improvement of QOL in a broader sense.

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.

Setting meaningful goals in rehabilitation: A qualitative study on the experiences of clients and clinicians in working with a practical tool.

OBJECTIVE: To evaluate the experience of clients and clinicians in working with a tool to help set goals that are personally meaningful to rehabilitation clients. DESIGN: We have applied the tool in the outpatient rehabilitation setting. Clients' and clinicians' experiences in working with the tool were evaluated in individual, semi-structured interviews and focus group interviews, respectively. Thematic analysis was used to analyze the data. SETTING: A university medical center and a rehabilitation center. SUBJECTS: Clients with a first-time stroke (n = 8) or multiple sclerosis (n = 10), and clinicians (n = 38). INTERVENTION: The tool to help set meaningful goals consisted of a session (i) to explore the client's fundamental beliefs, goals and attitudes and (ii) to identify a meaningful overall rehabilitation goal. The results of that session were used by the multidisciplinary rehabilitation team (iii) to help the client to set specific rehabilitation goals that served to achieve the meaningful overall rehabilitation goal. RESULTS: Both clients and clinicians reported that the tool helped to set a meaningful overall rehabilitation goal and specific goals that became meaningful as they served to achieve the overall goal. This contributed to clients' intrinsic rehabilitation motivation. In some clients, the meaningfulness of the rehabilitation goals facilitated the process of behavior change. Both clients and clinicians made suggestions on how the tool could be further improved. CONCLUSION: In the opinion of both clients and clinicians, the tool does indeed result in goal setting that is personally meaningful. Further development, implementation and evaluation of the tool is warranted.