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Published on: December 9, 2015
A Qualitative Study of Lived Treatment Experiences and Preferences of Long-Term DMT Users with Relapsing-Remitting
Clair-Antoine Veyrier1,2, Patrick Vermersch3, Olivier Casez4,5
1Patient-Reported Outcomes Research (PROQOL), Health Economics Clinical Trial Unit (URC-ECO), Hotel-Dieu Hospital, AP-HP, 1 Place du Parvis Notre-Dame, 75004, Paris, France. clair-antoine.veyrier@aphp.fr.
Introduction:
Relapsing-remitting multiple sclerosis (RRMS) requires prolonged use of disease-modifying therapies (DMTs), often perceived as burdensome. This study explored the lived treatment experiences of long-term DMT users with RRMS.
Methods:
This qualitative, non-interventional study used semi-structured interviews with 20 French-speaking adults with RRMS treated with DMTs for ≥ 10 years. Participants were recruited in France via patient associations and neurology clinics. Exclusion criteria included progressive MS or cognitive impairment. Interviews were conducted remotely and transcribed for thematic analysis using NVivo software, guided by a general inductive and grounded theory framework. Data saturation was monitored, and coding was performed by multiple researchers to ensure reliability.
Results:
Participants (mean age 52 years; 60% female; mean disease duration 20 years) reported strong preference for oral or infrequent infusion DMTs due to lower perceived treatment burden. Frequent home injections were linked with anxiety and reduced autonomy. Voluntary treatment pauses were common, motivated by fatigue or social needs, but constrained by the fear of relapse. Treatment experiences influenced identity and required substantial daily organization.
Conclusion:
Long-term patients with RRMS incorporate DMTs into their routines and identities, favoring less frequent, lower-burden regimens. Findings support the need for personalized care strategies that consider treatment fatigue and promote shared decision-making.
