Keywords
Rare diseases
Patients
Caregivers
How to Cite
Copyright © | All rights reserved.
The journal holds the exclusive copyright for the publication of this article under the terms of Brazilian law 9610/98.
Partial reproduction
The use of parts of the texts, figures and questionnaire of the article is free, being mandatory the citation of the authors and journal.
Total reproduction
It is expressly prohibited and must be authorized by the journal.
Abstract
Objective: To synthesize scientific evidence on health literacy for caregivers and people with rare diseases. Methods: Integrative literature review, conducted in 06 stages, in the PUBMED, SCOPUS and MEDLINE databases via the VHL portal, in English and Portuguese, with no time limit, using the descriptors combined with each other through the Boolean AND operator. Results: A sample of 8 articles was obtained, being chosen 4 categories: Health literacy for the production of support materials for family members, caregivers, and people with rare diseases; Health literacy in the transition of care for people with rare diseases; Health literacy and Health-Related Quality of Life for people with rare diseases and Health literacy and empowerment in rare diseases. Final considerations: Health literacy in rare diseases is still lacking globally. It is necessary to encourage further studies so that in the future the definition of the term health literacy can be rigorously expanded in the multidimensional aspect, focusing on the person with a rare disease at the center of care, involving family, caregiver and the person with a rare disease to promote systems sustainable and equitable.
References
ARIART JAB, et al. Da busca pelo diagnóstico às incertezas do tratamento: desafios do cuidado para as doenças genéticas raras no Brasil, Ciênc. saúde coletiva, 2019; 24(10): 3637-3650.
BADIU C, et al. Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism, Orphanet Journal of Rare Diseases, 2017; 12 (57).
CALCATERRA V e ZUCCOTTI G. Non-Communicable Diseases and Rare Diseases: A Current and Future Public Health Challenge within Pediatrics, Children 2022, 9, 1491.
CHENG PC, et al. Transition of patients with neuromuscular disease and chronic ventilator-dependent respiratory failure from pediatric to adult pulmonary care. Paediatric Respiratory Reviews, 2020; 33: 3-8.
CORDEIRO MD e SAMPAIO HAC. Aplicação dos fundamentos do letramento em saúde no consentimento informado. Rev. bioét., 2019; 27(03): 410-8.
DIMITRI P, et al. Accelerating digital health literacy for the treatment of growth disorders: The impact of a massive open online course, Frontiers in Public Health, 2023; 11.
FALCÃO M, et al. A Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases: A Model Transferable across Diseases, International Journal of Environmental Research and Public Health, 2023; 20 (2): 968.
FERREIRA CR. The burden of rare diseases, Am J Med Genet, 2019; 1–8.
FRANCISCO R, et al. A Participatory Framework for Plain Language Clinical Management Guideline Development, International Journal of Environmental Research and Public Health, 2022; 19 (20): 13506.
FREDERICO P. Alfabetização, letramento ou literacia em saúde? Traduzindo e aplicando o conceito de Heath literacy no Brasil. Ciência & Saúde Coletiva, 2023; 28(5):1563-1573.
GRASEMANN C, et al. Transition for adolescents with a rare disease: results of a nationwide German project, Orphanet Journal of Rare Diseases, 2023; 18 (93).
JACKSON AD et al. Associations between health literacy and patient outcomes in adolescents and young adults with cystic fibrosis. European Journal of Public Health, 2019; 30 (01): 112–118.
KANEJIMA Y, et al. Impact of health literacy in patients with cardiovascular diseases: A systematic review and meta-analysis. Patient Education and Counseling, 2022; 105 (07): 1793-1800.
KIM K, et al. The Relation Between eHealth Literacy and Health-Related Behaviors: Systematic Review and Meta-analysis. J Med Internet Res, 2023; 25: e40778.
MENDES KS, et al. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto Contexto Enferm, 2008; 17(4): 758-64.
NGUYEN CQ, et al. ‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics. Health expectations, 2022; 25: 3175–3191.
NUTBEAM D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 2000; 15(03): 259–267.
NUTBEAM D e LLOYD JE. Understanding and Responding to Health Literacy as a Social Determinant of Health, Annual Review of Public Health, 2021; 42:159–73.
PAGE MJ, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ, 2021;372(71):1-9.
RIEMANN L, et al. The Role of Health Literacy in Health Behavior, Health Service Use, Health Outcomes, and Empowerment in Pediatric Patients with Chronic Disease: A Systematic Review. International Journal of Environmental Research and Public Health, 2021; 18(23): 12464.
SANTIS MD, et al. Patient empowerment of people living with rare diseases. Its contribution to sustainable and resilient healthcare systems, Ann Ist Super Sanità, 2019; 55 (3): 283-291.
SCHMIDT TJ, et al. Health-related quality of life and health literacy in patients with systemic mastocytosis and mast cell activation syndrome, Orphanet Journal of Rare Diseases, 2022; 17(295).
SHOURICK J, et al. Assessing rare diseases prevalence using literature quantification, Orphanet J Rare Dis, 2021; 16: 139.
SMITH SA e CARBONE ET. Reintegrate Empowerment and Health Literacy to Advance Public Health and Healthcare Delivery, Stud Health Technol Inform, 2020; 269:369-399.
URSI ES e GAVÃO CM. Prevenção de lesões de pele no perioperatório: revisão integrativa da literature, Rev Latinoam Enferm., 2006; 14(1):124-131.
VERWEEL L, et al. The effect of digital interventions on related health literacy and skills for individuals living with chronic diseases: A systematic review and meta-analysis. International Journal of Medical Informatics, 2023; 177: 105114.
WORLD HEALTH ORGANIZATION (WHO). Health literacy toolkit for low- and middleincome countries. Regional Office for South-East Asia, 2014.
WORLD HEALTH ORGANIZATION (WHO). Health promotion glossary of terms 2021. Geneva: World Health Organization, 2021. Licence: CC BY-NC-SA 3.0IGO.
WORLD HEALTH ORGANIZATION (WHO). Promoting health in the SDGs. Geneva, 2016.
ZHENG M, et al. The relationship between health literacy and quality of life: a systematic review and meta-analysis. Health and Quality of Life Outcomes, 2018; 16 (201).