An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study
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 (<i>p</i> = 0.0001) in patients with relapsing MS and by 3.28 (5.24) points (<i>p</i> = 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.
Authors
- Paloma Amil-Bujan
- Clàudia Coll (ORCID: https://orcid.org/0000-0003-2927-4008)
- Sara Llufriú (ORCID: https://orcid.org/0000-0003-4273-9121)
- Jaume Sastre‐Garriga (ORCID: https://orcid.org/0000-0002-1589-2254)
- Miguel Merchan-Ruiz (ORCID: https://orcid.org/0000-0002-1115-8132)
- Núria Solà‐Valls (ORCID: https://orcid.org/0000-0002-6396-219X)
- Xavier Montalbán (ORCID: https://orcid.org/0000-0002-0098-9918)
- Silvia Peralta-Moncusí
- Carmen Bertran-Noguer
- Cristina Bosch‐Farré (ORCID: https://orcid.org/0000-0002-3254-6601)
- M. Alba Mañé-Martínez (ORCID: https://orcid.org/0000-0002-8901-4534)
- Cristina Ramo‐Tello (ORCID: https://orcid.org/0000-0001-8643-5053)
- Luís Brieva (ORCID: https://orcid.org/0000-0002-5871-6189)
- Miguel-Angel Robles-Sanchez (ORCID: https://orcid.org/0000-0002-9752-9802)
- Lluís Ramió‐Torrentà (ORCID: https://orcid.org/0000-0002-6999-1004)
- Santiago Pérez‐Hoyos (ORCID: https://orcid.org/0000-0001-9797-4917)
- Ana Hernando (ORCID: https://orcid.org/0000-0002-7939-8570)
- María Jesús Arévalo (ORCID: https://orcid.org/0000-0003-0626-5555)
- Ángel Guillermo Arévalo-Bernabé
- Mariona Carabí
- Maria Cinta Zabay
- Elisenda Anglada-Clofent
- Rebeca Menéndez-Díaz
- Montserrat Aroca-Alsina
Institutions
- Generalitat de Catalunya (ES)
- Universitat de Girona (ES)
- Hospital Universitari Arnau de Vilanova (ES)
- Spanish Multiple Sclerosis Network (ES)
- Clínica Girona (ES)
- Institut de Recerca Biomèdica Catalunya Sud (ES)
- Institut d'Investigació Biomèdica de Girona (ES)
- Hospital Santa Caterina (ES)
- Vall d'Hebron Hospital Universitari (ES)
- Instituto de Investigación Biomédica de Lleida (ES)
- Hospital Universitari Sant Joan de Reus (ES)
- Hospital Universitari Joan XXIII de Tarragona (ES)
- Hospital Universitari Germans Trias i Pujol (ES)
- Hospital Universitari de Girona Doctor Josep Trueta (ES)
- Consorci Institut D'Investigacions Biomediques August Pi I Sunyer (ES)
- Universitat de Barcelona (ES)
Publication Details
- Journal
- Frontiers in Neurology
- Published
- 2025-04-29
- DOI
- https://doi.org/10.3389/fneur.2025.1581038
- Citations
- 1
- Primary Topic
- Interprofessional Education and Collaboration
- Type
- article
- Field-Weighted Citation Impact
- 2.82