IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v20y2023i2p968-d1025802.html
   My bibliography  Save this article

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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/20/2/968/pdf
    Download Restriction: no

    File URL: https://www.mdpi.com/1660-4601/20/2/968/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. 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.
    2. 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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. David García-García & Francisco Javier Pérez-Rivas, 2022. "Health Literacy and Its Sociodemographic Predictors: A Cross-Sectional Study of a Population in Madrid (Spain)," IJERPH, MDPI, vol. 19(18), pages 1-14, September.
    2. Dulce Nascimento Do Ó & Ana Rita Goes & Gerald Elsworth & João F. Raposo & Isabel Loureiro & Richard H. Osborne, 2022. "Cultural Adaptation and Validity Testing of the Portuguese Version of the Health Literacy Questionnaire (HLQ)," IJERPH, MDPI, vol. 19(11), pages 1-18, May.
    3. Ya Gao & Chen Chen & Hong Hui & Mingyue Chen & Ning Chen & Hong Chen & Weiming Zeng & Yan Wei & Zhaoxin Wang & Jianwei Shi, 2022. "Improving Health Literacy: Analysis of the Relationship between Residents’ Usage of Information Channels and Health Literacy in Shanghai, China," IJERPH, MDPI, vol. 19(10), pages 1-11, May.
    4. Andreia Costa & Rodrigo Feteira-Santos & Violeta Alarcão & Adriana Henriques & Teresa Madeira & Ana Virgolino & Miguel Arriaga & Paulo J. Nogueira, 2023. "Health Literacy among Older Adults in Portugal and Associated Sociodemographic, Health and Healthcare-Related Factors," IJERPH, MDPI, vol. 20(5), pages 1-16, February.
    5. Jorge Lindo & Patrícia Coelho & Catarina Gavinhos & Manuel Martins & Joana Liberal & António Jorge Ferreira & Teresa Gonçalves & Francisco Rodrigues, 2024. "Health Status and COVID-19 Epidemiology in an Inland Region of Portugal: A Retrospective Study," IJERPH, MDPI, vol. 21(8), pages 1-14, August.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:20:y:2023:i:2:p:968-:d:1025802. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.