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, Vanessa dos Reis Ferreira

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)
40 Downloads (Pure)

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.

Original languageEnglish
Article number968
Number of pages17
JournalInternational Journal of Environmental Research and Public Health
Volume20
Issue number2
DOIs
Publication statusPublished - 5 Jan 2023

Keywords

  • community-based participatory research
  • congenital disorders of glycosylation (CDG)
  • health literacy
  • patient education material (PEM)
  • patient empowerment
  • people-centric
  • plain-language
  • public and patient involvement (PPI)
  • rare diseases

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