Determinants of the experience of patients living with multiple sclerosis in terms of care pathway quality: An original French study

Abstract

Purpose

Taking into account the experience of patients living with chronic diseases, like multiple sclerosis (MS), in the assessment of the quality of their care pathway contributes significantly to improve these quality and their own state of health. This challenge requires better identification of the determinants of this experience. The study aimed to explore the determinants of the experience of MS patients in France concerning their care pathway quality.

Patient and methods

This study was based on a dedicated cross-sectional national survey that took place in 2021. Teams from regional MS networks and MS unit at the hospital, as well as patients’ associations, invited patients to participate throughout France. Patients’ experience was assessed using the Musicare questionnaire. The determinants explored concerned their sociodemographic characteristics, quality of life and disease characteristics. To explore association between MusiCare questionnaire dimension scores and these determinants, bivariate and multivariate analysis were performed.

Results

Data were exploitable for 1971 patients living throughout France. Multivariate analysis identified significant relationships between all but one of the Musicare dimensions and several of the determinants considered in this study. The presence of a supportive caregiver, better quality of life scores, receiving specialized follow-up for MS, being a male patient and long-term illness significantly improves patient experience on one or more dimensions of the Musicare questionnaire.

Conclusion

Some of these results are consistent with those of previous studies on other chronic diseases. They require confirmation, but they pave the way for targeted interventions for these patients in France.