ArticleOrphanet journal of rare diseases2024
A scoping review of health literacy in rare disorders: key issues and research directions.
Article in Orphanet journal of rare diseases, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- A National Overview of Nutritional Care in Diet-Treated Inborn Errors of Metabolism in Brazil.International journal of environmental research and public health · 2026Article
- TikTok as a Platform for Patient Education and Health Information in Rare Genetic Diseases: Cross-Sectional Study.JMIR formative research · 2026Article
- Association of prior interstitial lung disease awareness with knowledge, attitudes, and practices in Saudi Arabia: a national cross-sectional study.Frontiers in public health · 2026Observational
- Embarking on a Treatment Journey: Experiences of Caregivers of Young Children With Craniofacial Microsomia.The Journal of craniofacial surgery · 2025Article
- Tracking Public Interest in Rare Diseases and Eosinophilic Disorders in Germany: Web Search Analysis.JMIR infodemiology · 2025Article
- Filling the gaps: Information sources and needs of patients with intestinal failure and their caregivers.Intestinal Failure (New York, N.Y.)Article
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Authors and funding
9 authors.
Funding
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Abstract
backgroundThe ability to find, understand, appraise and utilise health information is crucial among individuals living with rare disorders. The aim of this study was to give a comprehensive overview of the literature on health literacy in adult persons with rare disorders.
methodsWe applied a scoping review methodology and performed a systematic search in 2021 in bibliographic databases. Searches were conducted in Medline (Ovid), Embase (Ovid), PsycInfo (Ovid), CINAHL (ebsco), and ERIC (Ovid). References were sorted and evaluated for inclusion using EndNote and Covidence. This review was guided by the question "What are the characteristics of research on health literacy in rare disorders?"
resultsThe database searches yielded 75 eligible reports. A total of 6223 individuals with rare disorders were represented alongside 1707 caregivers. The reports in this review have included study participants representing a total of 80 different rare disorders with unique ORPHA and ICD-10 codes. The results revealed that persons with rare disorders often exhibit gaps in health literacy through a lack of knowledge and access to information related to self-management, their own diagnosis and health, as well as daily coping and social rights. In addition, the importance of aid and information from healthcare personnel and the significance of getting social support from others in the same situation were accentuated.
conclusionThis review emphasizes the importance of reinforcing health literacy among persons with rare disorders through peer support and education. This is the first review to give a comprehensive and state-of-the-art overview of literature investigating health literacy among persons with rare disorders and offers a basis for further research.
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