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

Author

Listed:
  • Marta Falcão

    (Institute of Hygiene and Tropical Medicine (IHMT), NOVA University Lisbon, 1349-008 Lisbon, Portugal
    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)

  • 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
    Institute of Biomolecular Chemistry, National Research Council of Italy, 80078 Pozzuoli, Italy
    Department of Environmental, Biological and Pharmaceutical Sciences and Technologies, University of Campania “Luigi Vanvitelli”, 81100 Caserta, Italy)

  • 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
    UCIBIO, Department of Life Sciences, NOVA School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
    Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University 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
    UCIBIO, Department of Life Sciences, NOVA School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
    Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University 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
    UCIBIO, Department of Life Sciences, NOVA School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
    Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
    Portuguese Association for Congenital Disorders of Glycosylation (CDG), Department of Life Sciences, School of Science and Technology, NOVA University 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
    UCIBIO, Department of Life Sciences, NOVA School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
    Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
    Portuguese Association for Congenital Disorders of Glycosylation (CDG), Department of Life Sciences, School of Science and Technology, NOVA University 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
    ALiCE—Associate Laboratory in Chemical Engineering, Faculty of Engineering, University of Porto, Rua Dr. Roberto Frias, 4200-465 Porto, 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
    UCIBIO, Department of Life Sciences, NOVA School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
    Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
    LAQV (Associate Lab for Green Chemistry)—Chemistry Department, NOVA 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
    Centre of Metabolic Diseases, Department of Pediatrics, KU Leuven, 3000 Leuven, Belgium)

  • Larisa Aragon Castro

    (Swiss Personalized Health Network (SPHN), 3001 Bern, Switzerland
    EUPATI—European Patient’s Academy on Therapeutic Innovation, 3008 Bern, Switzerland
    SNSF Swiss National Science Foundation, 3001 Bern, Switzerland)

  • Cláudia de Freitas

    (Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), 4050-600 Porto, Portugal
    EPI Unit—Instituto de Saúde Pública, Universidade do Porto, 4050-600 Porto, Portugal
    Departamento de Ciências da Saúde Pública e Forenses e Educação Médica, Faculdade de Medicina, Universidade do Porto, 4200-319 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
    UCIBIO, Department of Life Sciences, NOVA School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
    Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
    Portuguese Association for Congenital Disorders of Glycosylation (CDG), Department of Life Sciences, School of Science and Technology, NOVA University 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
    UCIBIO, Department of Life Sciences, NOVA School of Science and Technology, NOVA University of Lisbon, 2819-516 Caparica, Portugal
    Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
    Portuguese Association for Congenital Disorders of Glycosylation (CDG), Department of Life Sciences, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal)

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.

Suggested Citation

  • 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 & Lar, 2023. "A Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases: A Model Transferable across Diseases," IJERPH, MDPI, vol. 20(2), pages 1-17, January.
  • Handle: RePEc:gam:jijerp:v:20:y:2023:i:2:p:968-:d:1025802
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    References listed on IDEAS

    as
    1. Iraj Poureslami & Jacek Kopec & Noah Tregobov & Jessica Shum & Rick Sawatzky & Richard Hohn & J. Mark FitzGerald, 2021. "An Integrated Framework to Conceptualize and Develop the Vancouver Airways Health Literacy Tool (VAHLT)," IJERPH, MDPI, vol. 18(16), pages 1-16, August.
    2. Miguel Arriaga & Rita Francisco & Paulo Nogueira & Jorge Oliveira & Carlota Silva & Gisele Câmara & Kristine Sørensen & Christina Dietscher & Andreia Costa, 2022. "Health Literacy in Portugal: Results of the Health Literacy Population Survey Project 2019–2021," IJERPH, MDPI, vol. 19(7), pages 1-15, April.
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