An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study
BackgroundMultiple 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, w...
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2025-04-01
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| author | Miguel Ángel Robles-Sánchez Miguel Ángel Robles-Sánchez Miguel Ángel Robles-Sánchez Paloma Amil-Bujan Cristina Bosch-Farré Clàudia Coll-Martínez Clàudia Coll-Martínez María Jesús Arévalo Elisenda Anglada-Clofent Rebeca Menéndez-Díaz Montserrat Aroca-Alsina Montserrat Aroca-Alsina Miguel Merchan-Ruiz Miguel Merchan-Ruiz Santiago Pérez-Hoyos Santiago Pérez-Hoyos Ángel Guillermo Arévalo-Bernabé Ángel Guillermo Arévalo-Bernabé Xavier Montalban Ana Hernando Sara LLufriú Silvia Peralta-Moncusí Lluís Brieva Cristina Ramo-Tello Mariona Carabí Nuria Solà-Valls Maria Cinta Zabay Maria Alba Mañé-Martínez Jaume Sastre-Garriga Lluís Ramió-Torrentà Lluís Ramió-Torrentà Lluís Ramió-Torrentà Carmen Bertran-Noguer |
| author_facet | Miguel Ángel Robles-Sánchez Miguel Ángel Robles-Sánchez Miguel Ángel Robles-Sánchez Paloma Amil-Bujan Cristina Bosch-Farré Clàudia Coll-Martínez Clàudia Coll-Martínez María Jesús Arévalo Elisenda Anglada-Clofent Rebeca Menéndez-Díaz Montserrat Aroca-Alsina Montserrat Aroca-Alsina Miguel Merchan-Ruiz Miguel Merchan-Ruiz Santiago Pérez-Hoyos Santiago Pérez-Hoyos Ángel Guillermo Arévalo-Bernabé Ángel Guillermo Arévalo-Bernabé Xavier Montalban Ana Hernando Sara LLufriú Silvia Peralta-Moncusí Lluís Brieva Cristina Ramo-Tello Mariona Carabí Nuria Solà-Valls Maria Cinta Zabay Maria Alba Mañé-Martínez Jaume Sastre-Garriga Lluís Ramió-Torrentà Lluís Ramió-Torrentà Lluís Ramió-Torrentà Carmen Bertran-Noguer |
| author_sort | Miguel Ángel Robles-Sánchez |
| collection | DOAJ |
| description | BackgroundMultiple 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.MethodsPre-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.ResultsFifty-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. |
| format | Article |
| id | doaj-art-d63791c9c6cf4bc385fc38c8fcb1acef |
| institution | DOAJ |
| issn | 1664-2295 |
| language | English |
| publishDate | 2025-04-01 |
| publisher | Frontiers Media S.A. |
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| series | Frontiers in Neurology |
| spelling | doaj-art-d63791c9c6cf4bc385fc38c8fcb1acef2025-08-20T03:13:44ZengFrontiers Media S.A.Frontiers in Neurology1664-22952025-04-011610.3389/fneur.2025.15810381581038An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation studyMiguel Ángel Robles-Sánchez0Miguel Ángel Robles-Sánchez1Miguel Ángel Robles-Sánchez2Paloma Amil-Bujan3Cristina Bosch-Farré4Clàudia Coll-Martínez5Clàudia Coll-Martínez6María Jesús Arévalo7Elisenda Anglada-Clofent8Rebeca Menéndez-Díaz9Montserrat Aroca-Alsina10Montserrat Aroca-Alsina11Miguel Merchan-Ruiz12Miguel Merchan-Ruiz13Santiago Pérez-Hoyos14Santiago Pérez-Hoyos15Ángel Guillermo Arévalo-Bernabé16Ángel Guillermo Arévalo-Bernabé17Xavier Montalban18Ana Hernando19Sara LLufriú20Silvia Peralta-Moncusí21Lluís Brieva22Cristina Ramo-Tello23Mariona Carabí24Nuria Solà-Valls25Maria Cinta Zabay26Maria Alba Mañé-Martínez27Jaume Sastre-Garriga28Lluís Ramió-Torrentà29Lluís Ramió-Torrentà30Lluís Ramió-Torrentà31Carmen Bertran-Noguer32Department of Nursing, Health and Health Care Research Group, University of Girona, Girona, SpainDepartment of Neurology, Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainGrup d’Investigació Multidisciplinari d’Infermeria, Vall d’Hebron Institut de Recerca (VHIR), Hospital Universitari Vall d’Hebron, Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainExpert Patient Programme Catalonia, Integrated Care Strategy, General Directorate for Health Planning, Department of Health, Generalitat de Catalunya, Barcelona, SpainDepartment of Nursing, Health and Health Care Research Group, University of Girona, Girona, SpainGirona Neuroimmunology and Multiple Sclerosis Unit, Department of Neurology, Dr. Josep Trueta University Hospital and Santa Caterina Hospital, Girona, SpainNeurodegeneration and Neuroinflammation Research Group, Girona Biomedical Research Institute (IDIBGI), Salt, SpainDepartment of Neurology, Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainDepartment of Neurology, Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainDepartment of Neurology, Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainDepartment of Neurology, Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainGrup d’Investigació Multidisciplinari d’Infermeria, Vall d’Hebron Institut de Recerca (VHIR), Hospital Universitari Vall d’Hebron, Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainGirona Neuroimmunology and Multiple Sclerosis Unit, Department of Neurology, Dr. Josep Trueta University Hospital and Santa Caterina Hospital, Girona, SpainNeurodegeneration and Neuroinflammation Research Group, Girona Biomedical Research Institute (IDIBGI), Salt, SpainStatistics and Bioinformatics Unit (UEB), Vall d’Hebron Recerca Institute (VHIR), Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainDepartment of Genetics, Microbiology and Statistics, University of Barcelona, Barcelona, SpainDepartment of Pharmacy, Vall d’Hebron University Hospital, Barcelona, Spain0Basic, Translational and Clinical Pharmacy Research Group, Vall d’Hebron Institute of Research (VHIR), Barcelona, SpainDepartment of Neurology, Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Vall d’Hebron Barcelona Hospital Campus, Barcelona, Spain1MS-Neuroimmunology Unit and Laboratory of Advanced Imaging in Neuroimmunological Diseases (ImaginEM), Hospital Clinic Barcelona and Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), University of Barcelona, Barcelona, Spain1MS-Neuroimmunology Unit and Laboratory of Advanced Imaging in Neuroimmunological Diseases (ImaginEM), Hospital Clinic Barcelona and Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), University of Barcelona, Barcelona, Spain2Department of Neurology, Hospital Universitario Arnau de Vilanova, Institut de Recerca Biomèdica de Lleida-IRBLleida, Lleida, Spain2Department of Neurology, Hospital Universitario Arnau de Vilanova, Institut de Recerca Biomèdica de Lleida-IRBLleida, Lleida, Spain3Neurologist MS Unit, Hospital Germans Trias i Pujol, Badalona, Spain4Nurse MS Unit, Hospital Germans Trias i Pujol, Badalona, Spain5Hospital Universitari Sant Joan de Reus, Clinical and Epidemiological Neuroscience Group (NeuroÈpia), Institut d' Investigació Sanitària Pere Virgili (IISPV), Reus, Spain6Department of Nursing, Centro Neurorehabilitador Mas Sabater, Fundació Esclerosi Múltiple, Reus, Spain7Department of Neurology, Hospital Universitari de Tarragona Joan XXIII, Tarragona, SpainDepartment of Neurology, Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Vall d’Hebron Barcelona Hospital Campus, Barcelona, SpainGirona Neuroimmunology and Multiple Sclerosis Unit, Department of Neurology, Dr. Josep Trueta University Hospital and Santa Caterina Hospital, Girona, SpainNeurodegeneration and Neuroinflammation Research Group, Girona Biomedical Research Institute (IDIBGI), Salt, Spain8Department of Medical Sciences, University of Girona, Girona, SpainDepartment of Nursing, Health and Health Care Research Group, University of Girona, Girona, SpainBackgroundMultiple 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.MethodsPre-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.ResultsFifty-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.https://www.frontiersin.org/articles/10.3389/fneur.2025.1581038/fullmultiple sclerosisexpert patient programnursing-led interventiondisease-related knowledgequality of lifelifestyle habits |
| spellingShingle | Miguel Ángel Robles-Sánchez Miguel Ángel Robles-Sánchez Miguel Ángel Robles-Sánchez Paloma Amil-Bujan Cristina Bosch-Farré Clàudia Coll-Martínez Clàudia Coll-Martínez María Jesús Arévalo Elisenda Anglada-Clofent Rebeca Menéndez-Díaz Montserrat Aroca-Alsina Montserrat Aroca-Alsina Miguel Merchan-Ruiz Miguel Merchan-Ruiz Santiago Pérez-Hoyos Santiago Pérez-Hoyos Ángel Guillermo Arévalo-Bernabé Ángel Guillermo Arévalo-Bernabé Xavier Montalban Ana Hernando Sara LLufriú Silvia Peralta-Moncusí Lluís Brieva Cristina Ramo-Tello Mariona Carabí Nuria Solà-Valls Maria Cinta Zabay Maria Alba Mañé-Martínez Jaume Sastre-Garriga Lluís Ramió-Torrentà Lluís Ramió-Torrentà Lluís Ramió-Torrentà Carmen Bertran-Noguer An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study Frontiers in Neurology multiple sclerosis expert patient program nursing-led intervention disease-related knowledge quality of life lifestyle habits |
| title | An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study |
| title_full | An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study |
| title_fullStr | An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study |
| title_full_unstemmed | An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study |
| title_short | An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study |
| title_sort | expert patient program for people living with multiple sclerosis improves knowledge and empowerment a pre test post test multicenter implementation study |
| topic | multiple sclerosis expert patient program nursing-led intervention disease-related knowledge quality of life lifestyle habits |
| url | https://www.frontiersin.org/articles/10.3389/fneur.2025.1581038/full |
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