An Expert Patient Program for People Living with Multiple Sclerosis Improves Knowledge and Empowerment: A Pre-test, Post-test Multicenter Implementation Study

Miguel Angel Robles Sanchez^1*Paloma Amil-Bujan²Cristina Bosch-Farré³Clàudia Coll Martínez⁴María Jesús Arévalo Navinés¹Elisenda Anglada-Clofent¹Rebeca Menéndez-Díaz¹Montserrat Aroca-Alsina¹Miguel Merchan-Ruiz⁴Santiago Pérez-Hoyos⁵Ángel Guillermo Arévalo-Bernabé⁶Xavier Montalban¹Ana Hernando⁷Sara Llufriú⁷Sílvia Peralta-Moncusí⁸Lluís Brieva⁸Cristina M Ramo-Tello⁹Mariona Carabí¹⁰Nuria Solà-Valls¹¹Maria Cinta Zabay¹²Maria Alba Mañé-Martínez¹³Jaume Sastre-Garriga¹Lluís Ramió-Torrentà⁴Carme Bertran-Noguer³

• ¹Center for Multiple Sclerosis of Catalonia, Vall d'Hebron University Hospital, Barcelona, Spain
• ²Department of Health, Government of Catalonia, Barcelona, Catalonia, Spain
• ³University of Girona, Girona, Catalonia, Spain
• ⁴Doctor Josep Trueta Girona University Hospital, Girona, Catalonia, Spain
• ⁵Vall d'Hebron Research Institute (VHIR), Barcelona, Catalonia, Spain
• ⁶Vall d'Hebron University Hospital, Barcelona, Catalonia, Spain
• ⁷Hospital Clinic of Barcelona, Barcelona, Catalonia, Spain
• ⁸University Hospital Arnau de Vilanova, Lleida, Catalonia, Spain
• ⁹Hospital Germans Trias i Pujol, Barcelona, Balearic Islands, Spain
• ¹⁰Hospital Germans Trias i Pujol, Badalona, Spain
• ¹¹Hospital Universitari Sant Joan de Reus, Reus, Spain
• ¹²Centro neurorehabilitador Mas Sabater, Reus, Spain
• ¹³Joan XXIII University Hospital of Tarragona, Tarragona, Catalonia, Spain

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=.0001) in patients with relapsing MS and by 3.28 (5.24) points (p=.0004) in those with progressive MS. Lifestyle habits remained mostly unchanged, except for medication selfmanagement 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 selfmanagement, diet, and visits to certain professionals in MS units, despite decreased quality of life and disability in participants with progressive disease.