An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study
Por:
Robles-Sánchez, MA, Amil-Bujan, P, Bosch-Farré, C, Coll-Martínez, C, Arévalo, MJ, Anglada-Clofent, E, Menéndez-Díaz, R, Aroca-Alsina, M, Merchan-Ruiz, M, Pérez-Hoyos, S, Arévalo-Bernabé, AG, Montalban, X, Hernando, A, Llufriú, S, Peralta-Moncusi, S, Brieva, L, Ramo-Tello, C, Carabi, M, Solà-Valls, N, Zabay, MC, Mañé-Martínez, MA, Sastre-Garriga, J, Ramió-Torrentà, L and Bertran-Noguer, C
Publicada:
29 abr 2025
Ahead of Print:
29 abr 2025
Resumen:
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 (TM) (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.
Filiaciones:
Robles-Sánchez, MA:
Univ Girona, Dept Nursing, Hlth & Hlth Care Res Grp, Girona, Spain
Vall Hebron Barcelona Hosp Campus, Ctr Esclerosi Multiple Catalunya Cemcat, Dept Neurol, Barcelona, Spain
Hosp Univ Vall Hebron, Vall Hebron Barcelona Hosp Campus, Vall Hebron Inst Recerca VHIR, Grup Invest Multidisciplinari Infermeria, Barcelona, Spain
Amil-Bujan, P:
Generalitat Catalunya, Expert Patient Programme Catalonia, Integrated Care Strategy, Gen Directorate Hlth Planning,Dept Hlth, Barcelona, Spain
Bosch-Farré, C:
Univ Girona, Dept Nursing, Hlth & Hlth Care Res Grp, Girona, Spain
Coll-Martínez, C:
Dr Josep Trueta Univ Hosp, Dept Neurol, Girona Neuroimmunol & Multiple Sclerosis Unit, Girona, Spain
Santa Caterina Hosp, Girona, Spain
Girona Biomed Res Inst IDIBGI, Neurodegenerat & Neuroinflammat Res Grp, Salt, Spain
Arévalo, MJ:
Vall Hebron Barcelona Hosp Campus, Ctr Esclerosi Multiple Catalunya Cemcat, Dept Neurol, Barcelona, Spain
Anglada-Clofent, E:
Vall Hebron Barcelona Hosp Campus, Ctr Esclerosi Multiple Catalunya Cemcat, Dept Neurol, Barcelona, Spain
Menéndez-Díaz, R:
Vall Hebron Barcelona Hosp Campus, Ctr Esclerosi Multiple Catalunya Cemcat, Dept Neurol, Barcelona, Spain
Aroca-Alsina, M:
Vall Hebron Barcelona Hosp Campus, Ctr Esclerosi Multiple Catalunya Cemcat, Dept Neurol, Barcelona, Spain
Hosp Univ Vall Hebron, Vall Hebron Barcelona Hosp Campus, Vall Hebron Inst Recerca VHIR, Grup Invest Multidisciplinari Infermeria, Barcelona, Spain
Merchan-Ruiz, M:
Dr Josep Trueta Univ Hosp, Dept Neurol, Girona Neuroimmunol & Multiple Sclerosis Unit, Girona, Spain
Santa Caterina Hosp, Girona, Spain
Girona Biomed Res Inst IDIBGI, Neurodegenerat & Neuroinflammat Res Grp, Salt, Spain
Pérez-Hoyos, S:
Vall Hebron Barcelona Hosp Campus, Vall Hebron Recerca Inst VHIR, Stat & Bioinformat Unit UEB, Barcelona, Spain
Univ Barcelona, Dept Genet Microbiol & Stat, Barcelona, Spain
Arévalo-Bernabé, AG:
Vall Hebron Univ Hosp, Dept Pharm, Barcelona, Spain
Vall Hebron Inst Res VHIR, Basic Translat & Clin Pharm Res Grp, Barcelona, Spain
Montalban, X:
Vall Hebron Barcelona Hosp Campus, Ctr Esclerosi Multiple Catalunya Cemcat, Dept Neurol, Barcelona, Spain
Hernando, A:
Univ Barcelona, MS Neuroimmunol Unit, Barcelona, Spain
Univ Barcelona, Hosp Clin Barcelona, Lab Adv Imaging Neuroimmunol Dis Imagin EM, Barcelona, Spain
Univ Barcelona, Inst Invest Biomed August Pi & Sunyer IDIBAPS, Barcelona, Spain
Llufriú, S:
Univ Barcelona, MS Neuroimmunol Unit, Barcelona, Spain
Univ Barcelona, Hosp Clin Barcelona, Lab Adv Imaging Neuroimmunol Dis Imagin EM, Barcelona, Spain
Univ Barcelona, Inst Invest Biomed August Pi & Sunyer IDIBAPS, Barcelona, Spain
Peralta-Moncusi, S:
Hosp Arnau Vilanova, Inst Recerca Biomed Lleida IRBLleida, Dept Neurol, Lleida, Spain
Brieva, L:
Hosp Arnau Vilanova, Inst Recerca Biomed Lleida IRBLleida, Dept Neurol, Lleida, Spain
:
Hosp Germans Trias i Pujol, Neurologist MS Unit, Badalona, Spain
Carabi, M:
Hosp Germans Trias i Pujol, Nurse MS Unit, Badalona, Spain
Solà-Valls, N:
Hosp Univ St Joan de Reus, Clin & Epidemiol Neurosci Grp NeuroEpia, Inst Invest Sanitaria Pere Virgili IISPV, Reus, Spain
Zabay, MC:
Fdn Esclerosi Multiple, Ctr Neurorehabilitador Mas Sabater, Dept Nursing, Reus, Spain
Mañé-Martínez, MA:
Hosp Univ Tarragona Joan XXIII, Dept Neurol, Tarragona, Spain
Sastre-Garriga, J:
Vall Hebron Barcelona Hosp Campus, Ctr Esclerosi Multiple Catalunya Cemcat, Dept Neurol, Barcelona, Spain
Ramió-Torrentà, L:
Dr Josep Trueta Univ Hosp, Dept Neurol, Girona Neuroimmunol & Multiple Sclerosis Unit, Girona, Spain
Santa Caterina Hosp, Girona, Spain
Girona Biomed Res Inst IDIBGI, Neurodegenerat & Neuroinflammat Res Grp, Salt, Spain
Univ Girona, Dept Med Sci, Girona, Spain
Bertran-Noguer, C:
Univ Girona, Dept Nursing, Hlth & Hlth Care Res Grp, Girona, Spain
Green Submitted, gold
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