"After the transition is before the transition" – Experiences of medically induced treatment discontinuation of disease-modifying therapies in people with multiple sclerosis: A qualitative descriptive study [post]

2019 unpublished
Treatment discontinuation and non-adherence are widely discussed topics in the context of multiple sclerosis (MS). However, little is known about the experience of medically induced discontinuation of disease-modifying therapies in people with MS. Serious side effects or treatment failure are possible reasons for discontinuation. Prevalence of treatment switches is high in people with MS. Doctors initiate almost 50% of treatment switches. Methods: The aim of this study was to explore how people
more » ... with MS experience medically induced treatment discontinuation. Using a qualitative-descriptive approach, ten semistructured interviews were conducted with adult persons suffering from MS. Data analysis followed the procedure suggested by Saldaña. Open and axial coding were applied. The analysis was continued until it was possible to draw conclusions about participantsé xperiences and to answer the research question. At the end, the experiences could be synthesised into categories, resulting in a conceptual model. Results: " After the transition is before the transition " was identified as central phenomenon. People with MS experience medically induced discontinuation as part of a cycle of repeated treatment switches. They get to know treatment options, develop criteria for treatment and decide about treatment, taking into account professional advice and personal preferences. Once treatment starts, health care professionals and people with MS assess whether it is well-tolerated and effective. If not, a decision about treatment discontinuation is necessary. Discontinued treatment implies that the cycle begins again. Health personnel initiates the cycle and supports patients with professional advice. Family and friends ensure that the perspective of people with MS is considered in the decision process. Conclusions: Experiencing medically induced treatment discontinuation is a silent
doi:10.21203/rs.2.16027/v1 fatcat:glb7ujpjbrgsbnycetrbhzzfny