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

Marta Falcão, Mariateresa Allocca, Ana Sofia Rodrigues, Pedro Granjo, Rita Francisco, Carlota Pascoal, Maria Grazia Rossi, Dorinda Marques-da-Silva, Salvador C. M. Magrinho, Jaak Jaeken, Larisa Aragon Castro, Cláudia de Freitas, Paula A. Videira, Luísa de Andrés-Aguayo and Vanessa dos Reis Ferreira ()
Additional contact information
Marta Falcão: Institute of Hygiene and Tropical Medicine (IHMT), NOVA University Lisbon, 1349-008 Lisbon, Portugal
Mariateresa Allocca: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Ana Sofia Rodrigues: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Pedro Granjo: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Rita Francisco: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Carlota Pascoal: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Maria Grazia Rossi: IFILNOVA—Institute of Philosophy—Faculty of Social Sciences and Humanities, NOVA University of Lisbon, 1069-061 Lisbon, Portugal
Dorinda Marques-da-Silva: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Salvador C. M. Magrinho: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Jaak Jaeken: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Larisa Aragon Castro: Swiss Personalized Health Network (SPHN), 3001 Bern, Switzerland
Cláudia de Freitas: Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), 4050-600 Porto, Portugal
Paula A. Videira: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
Luísa de Andrés-Aguayo: Center for Genomic Regulation (CRG), Barcelona Biomedical Research Park (PRBB), 08003 Barcelona, Spain
Vanessa dos Reis Ferreira: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies—PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal

IJERPH, 2023, vol. 20, issue 2, 1-17

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.

Keywords: patient education material (PEM); rare diseases; community-based participatory research; public and patient involvement (PPI); health literacy; patient empowerment; people-centric; plain-language; congenital disorders of glycosylation (CDG) (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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