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

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.

Descrição

Article number - 968
This article belongs to the Special Issue Research on Patient-Centered Care.
The 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.

Palavras-chave

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

URI

http://hdl.handle.net/10400.8/16010

Citação

Falcão, 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