Resource Type

Article

Year

2022

Disorder / CDG Type

All CDGs

Abstract

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.

Authors

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

Keywords

CDG
Congenital Disorders of Glycosylation
Rare Diseases
patient education material PEM
community-based participatory research
public and patient involvement PPI
health literacy
Patient empowerment
people-centric
plain-language

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