Patient-reported experiences of daily life with disease-modifying therapy in multiple sclerosis (MS)

The aim of this study is to explore and describe patient-reported experiences of DMD in daily life in patients with MS.

For the purpose of decreasing progression of multiple sclerosis (MS), there are different disease-modifying drugs (DMD) registered, with various modes of administration (injections, oral therapies, infusions) and side-effect profiles. Clinical procedures for initiation and monitoring of the DMD differ nationally and internationally, though there are recommendations based on experience from the clinical trials and specific protocols for the various DMD. Development of evidence-based care for patients with MS requires knowledge about their experiences from living with disease-modifying drugs in daily life. A qualitative study is the first step within a larger research program aiming to increase understanding of patient-reported experiences of DMD in daily life.  

Aim

To explore and describe patient-reported experiences of DMD in daily life in patients with MS. 

Method

A descriptive qualitative interview-study is ongoing, with patients with MS treated with different DMDs. A purposeful sample of patients with MS who are living with MS and DMD are selected with variation regarding type of administration of DMD (injections, oral therapy, or regular infusions), gender, age and disease severity. The data collection comprises recorded, semi-structured interviews with open question from an interview guide. Data analysis with qualitative content analysis will be performed.

Importance

The results of this qualitative interview study will provide valuable knowledge for health care staff who meet patients for initiation and follow-up of their daily life with MS and DMD. The strength here is the qualitative design with the possibility to inductively gain knowledge on patient-prioritized areas of interest in daily life with DMD. Themes from the qualitative analysis will thus point out important areas for further research eg. developing new interventions for initiation and follow-up of DMD for patients with MS. 

Principal Investigator

Scientific publications

KG
Content reviewer:
21-06-2023