An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study

Abstract

Background: Multiple sclerosis (MS) is associated with complex needs and demands, which require patient-centered care. Expert patient (EP) programs foster knowledge transfer through peer learning, facilitating patients’ empowerment to self-manage their disease. Based on a previous focus group study, we designed an EP program for MS coordinated by nursing professionals for implementation in the different MS reference units of Catalonia (Southwestern Europe). This study aimed to deploy a nurse-led Expert Patient Program of Catalonia™ (EPPC) for people with MS and evaluate its impact on disease-related knowledge, empowerment, and health indicators. Methods: Pre-test, post-test interventional, multicenter study conducted between January 2021 and December 2023 (NCT NCT04988880). Six MS teams recruited 12 groups of people with relapsing and progressive MS. Participants attended nine virtual sessions led by an EP, trained and supported by a nurse. Questionnaires were delivered after certain sessions and at 6 and 12 months. Results: Fifty-five participants with relapsing disease and 57 with progressive disease received the intervention. Nine of 18 knowledge questions showed significantly higher post-test vs. pre-test correct answers. Hospital Anxiety and Depression Scale remained unchanged for anxiety and transiently increased for depression, whereas the Patient Activation Measure-13 increased at 12 months, by mean (SD) 2.04 [5.88] points (p = 0.0001) in patients with relapsing MS and by 3.28 (5.24) points (p = 0.0004) in those with progressive MS. Lifestyle habits remained mostly unchanged, except for medication self-management and diet, whereas visits to nurses and other professionals in MS units significantly decreased. Physical health composite scores in the MS quality of life-54 questionnaire decreased, while the mental health composite scores remained unchanged. Fatigue Severity Scale scores remained unchanged and Expanded Disability Status Scale scores increased in participants with progressive disease. In conclusion, the nurse-led program was successfully implemented across Catalonia and resulted in increased MS knowledge and patient activation, impacting medication self-management, diet, and visits to certain professionals in MS units, despite decreased quality of life and disability in participants with progressive disease.