A community-based participatory framework to co-develop Patient Education Materials (PEMs) for rare diseases: A model transferable across diseases

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• dc.contributor.author Falcão, Marta
• dc.contributor.author Allocca, Mariateresa
• dc.contributor.author Rodrigues, Ana Sofia
• dc.contributor.author Granjo, Pedro
• dc.contributor.author Francisco, Rita
• dc.contributor.author Pascoal, Carlota
• dc.contributor.author Rossi, Maria Grazia
• dc.contributor.author Marques-da-Silva, Dorinda
• dc.contributor.author Magrinho, Salvador C. M.
• dc.contributor.author Jaeken, Jaak
• dc.contributor.author Castro, Larisa Aragon
• dc.contributor.author Freitas, Cláudia de
• dc.contributor.author Videira, Paula A.
• dc.contributor.author Andrés-Aguayo, Luísa de
• dc.contributor.author Ferreira, Vanessa Miriam dos Reis
• dc.date.accessioned 2023-03-16T07:16:41Z
• dc.date.available 2023-03-16T07:16:41Z
• dc.date.issued 2023
• dc.description.abstract At least 50% of chronic disease patients don't follow their care plans, leading to lower health outcomes and higher medical costs. Providing Patient Education Materials (PEMs) to individuals living with a disease can help to overcome these problems. PEMs are especially beneficial for people suffering from multisystemic and underrecognized diseases, such as rare diseases. Congenital disorders of glycosylation (CDG) are ultra-rare diseases, where a need was identified for PEMs in plain language that can clearly explain complex information. Community involvement in the design of PEMs is extremely important for diseases whose needs are underserved, such as rare diseases; however, attempts to involve lay and professional stakeholders are lacking. This paper presents a community-based participatory framework to co-create PEMs for CDG, that is transferable to other diseases. A literature review and questionnaire were performed, and only four articles describing the development of PEMS for rare diseases have been found, which demonstrates a lack of standardized approaches. The framework and PEMs were co-developed with CDG families and will be crucial in increasing health literacy and empowering families. We will close a gap in the creation of PEMs for CDG by delivering these resources in lay language in several languages.
• dc.format.mimetype application/pdf
• dc.identifier.citation Falcão M, Allocca M, Rodrigues AS, Granjo P, Francisco R, Pascoal C, Rossi MG, Marques-da-Silva D, Magrinho SCM, Jaeken J, Castro LA, de Freitas C, Videira PA, de Andrés-Aguayo L, Ferreira VDR. A community-based participatory framework to co-develop Patient Education Materials (PEMs) for rare diseases: A model transferable across diseases. Int J Environ Res Public Health. 2023 Jan 5;20(2):968. DOI: 10.3390/ijerph20020968
• dc.identifier.doi http://dx.doi.org/10.3390/ijerph20020968
• dc.identifier.issn 1661-7827
• dc.identifier.uri http://hdl.handle.net/10230/56247
• dc.language.iso eng
• dc.publisher MDPI
• dc.relation.ispartof Int J Environ Res Public Health. 2023 Jan 5;20(2):968
• dc.rights © 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
• dc.rights.accessRights info:eu-repo/semantics/openAccess
• dc.rights.uri https://creativecommons.org/licenses/by/4.0/
• dc.subject.keyword Community-based participatory research
• dc.subject.keyword Congenital disorders of glycosylation (CDG)
• dc.subject.keyword Health literacy
• dc.subject.keyword Patient education material (PEM)
• dc.subject.keyword Patient empowerment
• dc.subject.keyword People-centric
• dc.subject.keyword Plain-language
• dc.subject.keyword Public and patient involvement (PPI)
• dc.subject.keyword Rare diseases
• dc.title A community-based participatory framework to co-develop Patient Education Materials (PEMs) for rare diseases: A model transferable across diseases
• dc.type info:eu-repo/semantics/article
• dc.type.version info:eu-repo/semantics/publishedVersion