Experiences of persons with multiple sclerosis with rehabilitation-a qualitative interview study

Donya Ghaidar, Anna Sippel, Karin Riemann-Lorenz, Christopher Kofahl, Rebecca Morrison, Ingo Kleiter, Stephan Schmidt, Christian Dettmers, Holger Schulz, Christoph Heesen, Donya Ghaidar, Anna Sippel, Karin Riemann-Lorenz, Christopher Kofahl, Rebecca Morrison, Ingo Kleiter, Stephan Schmidt, Christian Dettmers, Holger Schulz, Christoph Heesen

Abstract

Background: Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS.

Methods: We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing-remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically.

Results: As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians' attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management.

Conclusion: Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant.

Keywords: Decision-making; Multiple sclerosis; Patient experiences; Qualitative study; Rehabilitation; Thematic analysis.

Conflict of interest statement

AS and CH are developers of the website. AS has received funding from Roche Pharma and salaries for talks from Novartis. CH has received research grants, congress travel compensations and salaries for talks from Biogen, Genzyme, Sanofi-Aventis, Bayer Healthcare, Merck, Teva Pharma, Roche Pharma, and Novartis. IK has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with with Alexion, Biogen, Celgene, Hexal, Horizon, Merck and Roche/Chugai. SSch has received fees for consulting and reimbursement for lecturing as well as attending symposia from Bayer Vital, Biogen, Merck, Roche, Genzyme and Teva. He has also received research funding from Bayer Vital and Merck. CD received honorarium from Biogen, Novartis and Roche for presentations. DG, RM, KRL, HS and CK declare that they have no competing interests.

© 2022. The Author(s).

Figures

Fig. 1
Fig. 1
Thematic map of themes and sub-themes of positive and negative pwMS’ attitudes and experiences with inpatient rehabilitation

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