Abstract
Background: Rehabilitation for people with MS (PwMS) aims to improve symptom management, activity levels, and quality of life (QoL). Despite positive effects of rehabilitation, systematic evaluation in clinical practice is often lacking. Comprehensive assessment should cover multiple dimensions, including QoL, physical and cognitive function, fatigue, and other symptoms. Individual goal-setting is recommended. No internationally recognized questionnaire pack exists for routine use.
Objective: To (1) develop a questionnaire package to evaluate rehabilitation outcomes; (2) evaluate the inpatient rehabilitation services at a national MS rehabilitation center in Norway; (3) provide recommendations to optimize the service.
Method: Phase 1 identified what PwMS perceive as good rehabilitation outcomes and their opinion on assessment frequency. Based on their feedback and literature review, a questionnaire pack was developed. In Phase 2, this package was used to evaluate the services at admission (T1), discharge (T2), and six weeks post-discharge (T3).
Results: Two focus group interviews (n=11) showed diverse factors considered important for successful rehabilitation. Participants emphasized a balanced approach, sufficient time to experience change, and regular follow-up. Flexibility in data collection methods, including digital tools, was highlighted.
The developed questionnaire pack included measures of symptom burden (SINTEF-Hakadals questionnaire), self-efficacy (General Perceived Self-Efficacy Scale), acceptance of MS (MS Acceptance Questionnaire), physical and psychological impact (Multiple Sclerosis Impact Scale-29), individual goal achievement, and overall health status (EQ5D-5L).
Of 118 patients invited, 103 (87.2%) participated. The average age was 49.8 years (SD=12, range 26-77), with 69.9% women (n=72). At admission, participants reported an average of 11.9 symptoms, indicating complex needs. A general reduction in symptom burden was observed from T1 to T2 and T3. Significant improvements were observed in symptom burden, self-efficacy, and quality of life from T1 to T2 and T3.
Conclusion: Inpatient rehabilitation significantly improved symptom burden, function, and quality of life for PwMS. Most participants showed positive progress during their stay, with benefits persisting after six weeks. However, some regression was observed, highlighting the need for further follow-up. Continuous follow-up is necessary to maintain rehabilitation gains.