Logo do repositório
 
Publicação

A Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases: A Model Transferable across Diseases

2023-01-05Artigo científico Acesso aberto
Ver registo simples
datacite.subject.fosCiências Médicas::Ciências da Saúde
datacite.subject.fosEngenharia e Tecnologia::Engenharia Química
datacite.subject.fosEngenharia e Tecnologia
datacite.subject.sdg16:Paz, Justiça e Instituições Eficazes
datacite.subject.sdg03:Saúde de Qualidade
datacite.subject.sdg11:Cidades e Comunidades Sustentáveis
datacite.subject.sdg17:Parcerias para a Implementação dos Objetivos
dc.contributor.authorFalcão, Marta
dc.contributor.authorAllocca, Mariateresa
dc.contributor.authorRodrigues, Ana Sofia
dc.contributor.authorGranjo, Pedro
dc.contributor.authorFrancisco, Rita
dc.contributor.authorPascoal, Carlota
dc.contributor.authorRossi, Maria Grazia
dc.contributor.authorMarques-da-Silva, Dorinda
dc.contributor.authorMagrinho, Salvador C. M.
dc.contributor.authorJaeken, Jaak
dc.contributor.authorCastro, Larisa Aragon
dc.contributor.authorFreitas, Cláudia de
dc.contributor.authorVideira, Paula A.
dc.contributor.authorAndrés-Aguayo, Luísa de
dc.contributor.authorFerreira, Vanessa dos Reis
dc.date.accessioned2026-03-26T12:56:59Z
dc.date.available2026-03-26T12:56:59Z
dc.date.issued2023-01-05
dc.descriptionArticle number - 968
dc.descriptionThis article belongs to the Special Issue Research on Patient-Centered Care.
dc.descriptionThe authors are grateful to the Sci and Volunteer program from NOVA School of Science and Technology FCT NOVA and CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN) for their input. We also acknowledge all collaborators involved in the creation of PEMs, especially CDG families and professionals.
dc.description.abstractAt 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.eng
dc.description.sponsorshipDorinda da Silva acknowledge the funding from LA/P/0045/2020(ALiCE), UIDB/50020/2020 and UIDP/50020/2020 (LSRE-LCM), funded by national funds through FCT/MCTES (PIDDAC). Carlota Pascoal (SFRH/BD/138647/2018) acknowledge the funding from the Fundação para a Ciência e Tecnologia (FCT), Portugal. Pedro Granjo was supported by CDG&Alliesfunding. Cláudia de Freitas acknowledges funding from the Foundation for Science and Technology—FCT under the Unidade de Investigação em Epidemiologia—Instituto de Saúde Pública da Univer-sidade do Porto (EPIUnit) (Ref. UIDB/04750/2020), Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR) (LA/P/0064/2020), the individual contract grant DL57/2016/CP1336/CT0001. Maria Grazia Rossi acknowledge the funding from the Fundação para a Ciência e Tecnologia (FCT), Portugal, SFRH/BPD/115073/2016 and PTDC/FER-FIL/28278/2017.
dc.identifier.citationFalcão, M.; Allocca, M.; Rodrigues, A.S.; Granjo, P.; Francisco, R.; Pascoal, C.; Rossi, M.G.; Marques-da-Silva, D.; Magrinho, S.C.M.; Jaeken, J.; et al. 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, 20, 968. https:// doi.org/10.3390/ijerph20020968
dc.identifier.doi10.3390/ijerph20020968
dc.identifier.eissn1660-4601
dc.identifier.urihttp://hdl.handle.net/10400.8/16010
dc.language.isoeng
dc.peerreviewedyes
dc.publisherMDPI
dc.relationALICE - Associate Laboratory in Chemical Engineering
dc.relationLaboratory of Separation and Reaction Engineering - Laboratory of Catalysis and Materials
dc.relationLaboratory of Separation and Reaction Engineering - Laboratory of Catalysis and Materials
dc.relationTowards therapeutic approaches for Human Glycosylation Disorders through immunological characterization
dc.relationEpidemiology Research Unit - Institute of Public Health, University of Porto
dc.relationLaboratory for Integrative and Translational Research in Population Health
dc.relationInterpreting metaphors: a pragmatic-argumentative model of linguistic meaning
dc.relationEvidence-based metaphors for diabetes care
dc.relation.hasversionhttps://www.mdpi.com/1660-4601/20/2/968
dc.relation.ispartofInternational Journal of Environmental Research and Public Health
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.subjectcommunity-based participatory research
dc.subjectcongenital disorders of glycosylation (CDG)
dc.subjecthealth literacy
dc.subjectpatient education material (PEM)
dc.subjectpatient empowerment
dc.subjectpeople-centric
dc.subjectplain-language
dc.subjectpublic and patient involvement (PPI)
dc.subjectrare diseases
dc.titleA Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases: A Model Transferable across Diseaseseng
dc.typejournal article
dspace.entity.typePublication
oaire.awardNumberLA/P/0045/2020
oaire.awardNumberUIDB/50020/2020
oaire.awardNumberUIDP/50020/2020
oaire.awardNumberSFRH/BD/138647/2018
oaire.awardNumberUIDB/04750/2020
oaire.awardNumberLA/P/0064/2020
oaire.awardNumberSFRH/BPD/115073/2016
oaire.awardNumberPTDC/FER-FIL/28278/2017
oaire.awardTitleALICE - Associate Laboratory in Chemical Engineering
oaire.awardTitleLaboratory of Separation and Reaction Engineering - Laboratory of Catalysis and Materials
oaire.awardTitleLaboratory of Separation and Reaction Engineering - Laboratory of Catalysis and Materials
oaire.awardTitleTowards therapeutic approaches for Human Glycosylation Disorders through immunological characterization
oaire.awardTitleEpidemiology Research Unit - Institute of Public Health, University of Porto
oaire.awardTitleLaboratory for Integrative and Translational Research in Population Health
oaire.awardTitleInterpreting metaphors: a pragmatic-argumentative model of linguistic meaning
oaire.awardTitleEvidence-based metaphors for diabetes care
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/LA%2FP%2F0045%2F2020/PT
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDB%2F50020%2F2020/PT
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDP%2F50020%2F2020/PT
oaire.awardURIhttp://hdl.handle.net/10400.8/16006
oaire.awardURIhttp://hdl.handle.net/10400.8/16007
oaire.awardURIhttp://hdl.handle.net/10400.8/14186
oaire.awardURIhttp://hdl.handle.net/10400.8/16008
oaire.awardURIhttp://hdl.handle.net/10400.8/16009
oaire.citation.endPage17
oaire.citation.issue2
oaire.citation.startPage1
oaire.citation.titleInternational Journal of Environmental Research and Public Health
oaire.citation.volume20
oaire.fundingStream6817 - DCRRNI ID
oaire.fundingStream6817 - DCRRNI ID
oaire.fundingStream6817 - DCRRNI ID
oaire.fundingStreamConcurso de avaliação no âmbito do Programa Plurianual de Financiamento de Unidades de I&D (2017/2018) - Financiamento Base
oaire.fundingStreamConcurso para Atribuição do Estatuto e Financiamento de Laboratórios Associados (LA)
oaire.fundingStreamConcurso para Financiamento de Projetos de Investigação Científica e Desenvolvimento Tecnológico em Todos os Domínios Científicos - 2017
oaire.versionhttp://purl.org/coar/version/c_970fb48d4fbd8a85
person.familyNameMarques da Silva
person.givenNameDorinda
person.identifier.orcid0000-0003-0460-5421
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.nameFundação para a Ciência e a Tecnologia
project.funder.nameFundação para a Ciência e a Tecnologia
project.funder.nameFundação para a Ciência e a Tecnologia
relation.isAuthorOfPublication475787c4-cf46-4b3b-96ec-a5278d5cc6f5
relation.isAuthorOfPublication.latestForDiscovery475787c4-cf46-4b3b-96ec-a5278d5cc6f5
relation.isProjectOfPublicationf46e7f95-7a64-4461-a140-7ef90ac7b296
relation.isProjectOfPublicationb8cc6c4f-3181-4666-bd4e-ed993f8cd85d
relation.isProjectOfPublicationde1fc1b0-4d62-490f-9bb5-687f92113373
relation.isProjectOfPublicationb46dc4be-7e7e-45f8-abca-5627eb562444
relation.isProjectOfPublicationef0b2d9a-5bd0-4561-8690-be1cac6989b1
relation.isProjectOfPublication24a003bd-6822-468e-a3fb-b383fbf042d8
relation.isProjectOfPublication7d76d3b8-7099-4150-920f-56a1a9b96eff
relation.isProjectOfPublicationc28b6797-4a65-4b68-8c88-3f817fd2563e
relation.isProjectOfPublication.latestForDiscoveryf46e7f95-7a64-4461-a140-7ef90ac7b296

Ficheiros

Principais
A mostrar 1 - 1 de 1
Miniatura indisponível
Nome:
A Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases_.pdf
Tamanho:
2.84 MB
Formato:
Adobe Portable Document Format
Ver/Abrir
Licença
A mostrar 1 - 1 de 1
Miniatura indisponível
Nome:
license.txt
Tamanho:
1.32 KB
Formato:
Item-specific license agreed upon to submission
Descrição:
Ver/Abrir

Coleções

LSRE-LCM - Artigos em Revistas Nacionais e de Circulação Internacional
ESTG - Artigos em revistas internacionais