{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,21]],"date-time":"2026-06-21T08:30:17Z","timestamp":1782030617385,"version":"3.54.5"},"reference-count":46,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2025,4,29]],"date-time":"2025-04-29T00:00:00Z","timestamp":1745884800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Neurol."],"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>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\u2019 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\u2122 (EPPC) for people with MS and evaluate its impact on disease-related knowledge, empowerment, and health indicators.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>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\u202fmonths.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>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\u202fmonths, by mean (SD) 2.04 [5.88] points (<jats:italic>p<\/jats:italic>\u202f=\u202f0.0001) in patients with relapsing MS and by 3.28 (5.24) points (<jats:italic>p<\/jats:italic>\u202f=\u202f0.0004) 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.<\/jats:p><\/jats:sec>","DOI":"10.3389\/fneur.2025.1581038","type":"journal-article","created":{"date-parts":[[2025,4,29]],"date-time":"2025-04-29T15:37:19Z","timestamp":1745941039000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":2,"title":["An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test, post-test multicenter implementation study"],"prefix":"10.3389","volume":"16","author":[{"given":"Miguel \u00c1ngel","family":"Robles-S\u00e1nchez","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paloma","family":"Amil-Bujan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cristina","family":"Bosch-Farr\u00e9","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cl\u00e0udia","family":"Coll-Mart\u00ednez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mar\u00eda Jes\u00fas","family":"Ar\u00e9valo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisenda","family":"Anglada-Clofent","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebeca","family":"Men\u00e9ndez-D\u00edaz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Montserrat","family":"Aroca-Alsina","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miguel","family":"Merchan-Ruiz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Santiago","family":"P\u00e9rez-Hoyos","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"\u00c1ngel Guillermo","family":"Ar\u00e9valo-Bernab\u00e9","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xavier","family":"Montalban","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ana","family":"Hernando","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sara","family":"LLufri\u00fa","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Silvia","family":"Peralta-Moncus\u00ed","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Llu\u00eds","family":"Brieva","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cristina","family":"Ramo-Tello","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mariona","family":"Carab\u00ed","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nuria","family":"Sol\u00e0-Valls","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Cinta","family":"Zabay","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Alba","family":"Ma\u00f1\u00e9-Mart\u00ednez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaume","family":"Sastre-Garriga","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Llu\u00eds","family":"Rami\u00f3-Torrent\u00e0","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carmen","family":"Bertran-Noguer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2025,4,29]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"765","DOI":"10.1001\/jama.2020.26858","article-title":"Diagnosis and treatment of multiple sclerosis: a review","volume":"325","author":"McGinley","year":"2021","journal-title":"JAMA"},{"key":"ref2","doi-asserted-by":"publisher","first-page":"331","DOI":"10.1016\/j.jns.2016.11.067","article-title":"Prevalence of depression and anxiety in multiple sclerosis: a systematic review and meta-analysis","volume":"372","author":"Boeschoten","year":"2017","journal-title":"J Neurol Sci"},{"key":"ref3","doi-asserted-by":"publisher","first-page":"1286122","DOI":"10.3389\/fneur.2023.1286122","article-title":"MS care: integrating advanced therapies and holistic management","volume":"14","author":"Giovannoni","year":"2023","journal-title":"Front Neurol"},{"key":"ref4","volume-title":"Regional Office for the Western Pacific. People-centred health care: a policy framework","year":"2007"},{"key":"ref5","year":"2015"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"2055217320959802","DOI":"10.1177\/2055217320959802","article-title":"The impact of the face-to-face consultation on decisional conflict in complex decision-making in multiple sclerosis: a pilot study","volume":"6","author":"Wilkie","year":"2020","journal-title":"Mult Scler J Exp Transl Clin"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"1","DOI":"10.2174\/1874434601812010001","article-title":"Shared decision-making for nursing practice: an integrative review","volume":"12","author":"Truglio-Londrigan","year":"2018","journal-title":"Open Nurs J"},{"key":"ref8","year":"2007"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"2444","DOI":"10.1002\/nop2.1261","article-title":"To support self-management for people with long-term conditions - the effect on shared decision-making, empowerment and coping after participating in group-learning sessions","volume":"9","author":"Petersson","year":"2022","journal-title":"Nurs Open"},{"key":"ref10","doi-asserted-by":"publisher","DOI":"10.1016\/j.msard.2022.103717","article-title":"Evaluating the impact of the understanding multiple sclerosis online course on participant MS knowledge, health literacy, resilience, self-efficacy, quality of life, and MS symptom severity","volume":"60","author":"Bessing","year":"2022","journal-title":"Mult Scler Relat Disord"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3390\/ijerph17165935","article-title":"Greater engagement with health information is associated with adoption and maintenance of healthy lifestyle behaviours in people with MS","volume":"17","author":"Lin","year":"2020","journal-title":"Int J Environ Res Public Health"},{"key":"ref12","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD008757.pub3","article-title":"Information provision for people with multiple sclerosis","volume":"2018","author":"K\u00f6pke","year":"2018","journal-title":"Cochrane Database Syst Rev"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"67","DOI":"10.1016\/j.enfcli.2013.11.005","article-title":"Autonomy of the patient with chronic diseases: from passive patient to active patient","volume":"24","author":"Gonz\u00e1lez","year":"2014","journal-title":"Enferm Clin"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"72","DOI":"10.1186\/s12916-024-03260-y","article-title":"The effectiveness, implementation, and experiences of peer support approaches for mental health: a systematic umbrella review","volume":"22","author":"Cooper","year":"2024","journal-title":"BMC Med [Internet]"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"166","DOI":"10.1097\/JNN.0000000000000514","article-title":"An expert patient program as a tool to empower people with multiple sclerosis","volume":"52","author":"Robles-Sanchez","year":"2020","journal-title":"J Neurosci Nurs"},{"key":"ref16","doi-asserted-by":"publisher","first-page":"1086","DOI":"10.12968\/bjon.2005.14.20.20052","article-title":"Expert patient Programme: managing patients with long-term conditions","volume":"14","author":"Plews","year":"2005","journal-title":"Br J Nurs"},{"key":"ref17","article-title":"Department of health","year":"2012"},{"key":"ref18","volume-title":"Departament de Salut G de Catalunya. Pla de salut de Catalunya 2021-2025 (Health Plan for Catalonia 2021-2025)","author":"De Catalunya","year":"2021"},{"key":"ref19","author":"de Catalunya","year":"2024"},{"key":"ref20","article-title":"Resultats del Programa Pacient Expert Catalunya\u00ae (PPE-CAT\u00ae) en insufici\u00e8ncia card\u00edaca (IC) i malaltia pulmonar obstructiva cr\u00f2nica (MPOC): 10 anys d\u2019evoluci\u00f3 d\u2019una activitat comunit\u00e0ria d\u2019aprenentatge entre iguals","author":"Mestre","year":"2018","journal-title":"XPA & Health Commun"},{"key":"ref21","doi-asserted-by":"publisher","DOI":"10.5334\/ijic.2050","article-title":"Allocation strategy for a controlled clinical trial to assess the expert patient program CataloniaTM clinical effectiveness on diabetes","volume":"15","author":"Amil","year":"2015","journal-title":"Int J Integr Care"},{"key":"ref22","doi-asserted-by":"publisher","first-page":"1172640","DOI":"10.3389\/fneur.2023.1172640","article-title":"An expert patient program to improve the empowerment and quality of life of people with multiple sclerosis: protocol for a multicenter pre-post intervention study","volume":"14","author":"Robles-Sanchez","year":"2023","journal-title":"Front Neurol"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"1023","DOI":"10.1080\/13854046.2016.1184317","article-title":"A new assessment tool for patients with multiple sclerosis from Spanish-speaking countries: validation of the brief international cognitive assessment for MS (BICAMS) in Argentina","volume":"30","author":"Vanotti","year":"2016","journal-title":"Clin Neuropsychol"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"891","DOI":"10.1177\/1352458511431076","article-title":"Recommendations for a brief international cognitive assessment for multiple sclerosis (BICAMS)","volume":"18","author":"Langdon","year":"2012","journal-title":"Mult Scler"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"361","DOI":"10.1111\/j.1600-0447.1983.tb09716.x","article-title":"The hospital anxiety and depression scale","volume":"67","author":"Zigmond","year":"1983","journal-title":"Acta Psychiatr Scand"},{"key":"ref26","article-title":"Department of health. Pla de Salut de Catalunya 2016 -2020\/Health Plan for Catalonia 2016 -2020)","year":"2016"},{"key":"ref27","doi-asserted-by":"publisher","first-page":"277","DOI":"10.1016\/S0163-8343(03)00043-4","article-title":"A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population","volume":"25","author":"Herrero","year":"2003","journal-title":"Gen Hosp Psychiatry"},{"key":"ref28","first-page":"29","article-title":"La consist\u00e8ncia interna i l\u2019estructura factorial de la versi\u00f3 catalana de la HADS","volume":"207","author":"Soto","year":"2008","journal-title":"Estudi preliminar amb una mostra de familiars i amics propers de malalts de c\u00e0ncer Revista del Collegi Oficial de Psic\u00f2legs de Catalunya"},{"key":"ref29","doi-asserted-by":"publisher","first-page":"627","DOI":"10.1093\/fampra\/cmx022","article-title":"Adaptation to European Spanish and psychometric properties of the patient activation measure 13 in patients with chronic diseases","volume":"34","author":"Moreno-Chico","year":"2017","journal-title":"Fam Pract"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"1918","DOI":"10.1111\/j.1475-6773.2005.00438.x","article-title":"Development and testing of a short form of the patient activation measure","volume":"40","author":"Hibbard","year":"2005","journal-title":"Health Serv Res"},{"key":"ref31","doi-asserted-by":"publisher","first-page":"930","DOI":"10.33588\/rn.26154.98089","article-title":"Impact of fatigue in multiple sclerosis: study of a population-based series in Valladolid","volume":"26","author":"Tola","year":"1998","journal-title":"Rev Neurol"},{"key":"ref32","doi-asserted-by":"publisher","first-page":"1444","DOI":"10.1212\/WNL.33.11.1444","article-title":"Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS)","volume":"33","author":"Kurtzke","year":"1983","journal-title":"Neurol Int"},{"key":"ref33","first-page":"181","article-title":"Spanish adaptation of the disease-specific questionnaire MSQOL-54 in multiple sclerosis patients","volume":"21","author":"Aymerich","year":"2006","journal-title":"Neurologia"},{"key":"ref34","doi-asserted-by":"publisher","first-page":"80","DOI":"10.1007\/s10903-016-0345-y","article-title":"The Catalonian expert patient programme for Chagas disease: an approach to comprehensive care involving affected individuals","volume":"19","author":"Claveria Guiu","year":"2017","journal-title":"J Immigr Minor Health"},{"key":"ref35","doi-asserted-by":"publisher","first-page":"999","DOI":"10.1186\/s12889-023-15910-6","article-title":"Effect of an educational intervention based on the theory of planned behavior on improving medication adherence in patients with multiple sclerosis treated with injectable disease-modifying drugs: randomized controlled trial","volume":"23","author":"Hamtaeigashti","year":"2023","journal-title":"BMC Public Health"},{"key":"ref36","doi-asserted-by":"publisher","first-page":"91","DOI":"10.1016\/j.pec.2011.03.013","article-title":"Implementation of a patient education program on multiple sclerosis relapse management","volume":"86","author":"K\u00f6pke","year":"2012","journal-title":"Patient Educ Couns"},{"key":"ref37","doi-asserted-by":"publisher","first-page":"411","DOI":"10.1136\/jnnp-2013-306441","article-title":"Evidence-based patient information programme in early multiple sclerosis: a randomised controlled trial","volume":"85","author":"K\u00f6pke","year":"2014","journal-title":"J Neurol Neurosurg Psychiatry"},{"key":"ref38","doi-asserted-by":"publisher","first-page":"1005","DOI":"10.1111\/j.1475-6773.2004.00269.x","article-title":"Development of the patient activation measure (PAM): conceptualizing and measuring activation in patients and consumers","volume":"39","author":"Hibbard","year":"2004","journal-title":"Health Serv Res"},{"key":"ref39","doi-asserted-by":"publisher","first-page":"82","DOI":"10.1177\/1359105314522085","article-title":"Variables associated with patient activation in persons with multiple sclerosis","volume":"21","author":"Goodworth","year":"2014","journal-title":"J Health Psychol"},{"key":"ref40","doi-asserted-by":"publisher","first-page":"1558","DOI":"10.3109\/09638280903567885","article-title":"Validation of the patient activation measure in a multiple sclerosis clinic sample and implications for care","volume":"32","author":"Stepleman","year":"2010","journal-title":"Disabil Rehabil"},{"key":"ref41","doi-asserted-by":"publisher","first-page":"320","DOI":"10.1097\/JAC.0b013e3181ba6e77","article-title":"Is patient activation associated with future health outcomes and healthcare utilization among patients with diabetes?","volume":"32","author":"Remmers","year":"2009","journal-title":"J Ambul Care Manage"},{"key":"ref42","doi-asserted-by":"publisher","first-page":"668","DOI":"10.1007\/s11606-012-2307-y","article-title":"Patient activation and improved outcomes in HIV-infected patients","volume":"28","author":"Marshall","year":"2013","journal-title":"J Gen Intern Med"},{"key":"ref43","doi-asserted-by":"publisher","first-page":"1443","DOI":"10.1111\/j.1475-6773.2006.00669.x","article-title":"Do increases in patient activation result in improved self-management behaviors?","volume":"42","author":"Hibbard","year":"2007","journal-title":"Health Serv Res"},{"key":"ref44","doi-asserted-by":"publisher","first-page":"255","DOI":"10.3233\/NRE-209002","article-title":"Are information provision interventions effective for people with multiple sclerosis? A Cochrane review summary with commentary","volume":"46","author":"Arienti","year":"2020","journal-title":"Neurorehabilitation"},{"key":"ref45","doi-asserted-by":"publisher","first-page":"1254","DOI":"10.1136\/bmj.39227.698785.47","article-title":"How effective are expert patient (lay led) education programmes for chronic disease?","volume":"334","author":"Griffiths","year":"2007","journal-title":"BMJ"},{"key":"ref46","doi-asserted-by":"publisher","first-page":"60","DOI":"10.1016\/j.jclinepi.2022.05.020","article-title":"Multiple sclerosis disease-related knowledge measurement instruments show mixed performance: a systematic review","volume":"149","author":"Gonzalez-del-Rio","year":"2022","journal-title":"J Clin Epidemiol"}],"container-title":["Frontiers in Neurology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fneur.2025.1581038\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,29]],"date-time":"2025-04-29T15:37:22Z","timestamp":1745941042000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fneur.2025.1581038\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,4,29]]},"references-count":46,"alternative-id":["10.3389\/fneur.2025.1581038"],"URL":"https:\/\/doi.org\/10.3389\/fneur.2025.1581038","relation":{},"ISSN":["1664-2295"],"issn-type":[{"value":"1664-2295","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,4,29]]},"article-number":"1581038"}}