Experiences of disease-modifying treatments in patients with multiple sclerosis – a qualitative study

Abstract Background There is an extensive and growing body of knowledge regarding disease-modifying treatment (DMT) in multiple sclerosis (MS) regarding their effects, impact on functioning and potential side-effects. Few studies have, however, investigated the patients’ perspectives regarding their experiences of DMT in daily life. Aim To investigate and describe the experience of DMT in the daily lives of patients with MS. Methods A qualitative design was applied using semi-structured interviews with eight patients with MS on different types of DMT. The interviews were analyzed using qualitative content analysis. Results Three themes emerged from the analysis; Fulfilled expectations in the light of previous treatments, Continuous need for treatment and side effect management, and Need for personalized feedback from the MS care team. Conclusion The patients’ described experiences and hopes for personalized treatment plans, procedures, and feedback on DMT outcome implicate the need for further development of person-centred interventions. Development of such care interventions should consider the patients’ perspectives on e.g., treatment preferences and procedures, social support, and the professionalism and expert-knowledge of MS care team professionals. The knowledge derived from this study may also inform the development of patient-reported experience- and outcome measures regarding daily life with DMT in MS.