ArticleOrphanet journal of rare diseases2025
The health-related quality of life of Brazilians with epidermolysis bullosa.
Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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Who cites it
1 citing paper in PubMed.
- The segmentation of the Argentine healthcare system in the care of patients with epidermolysis bullosa: challenges and proposals for a comprehensive model.Journal of community genetics · 2025Article
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4 authors.
Funding
Abstract
backgroundEpidermolysis bullosa (EB) presents various complications that can affect an individual's health-related quality of life (HRQoL) and nutritional status. This cross-sectional study evaluates HRQoL and its association with the socio-demographic, nutritional, and clinical profiles of Brazilians with EB.
resultsThe sample consisted of 129 individuals (median age: 15 years), approximately 57% female, mostly composed of the EB simplex clinical type, followed by the dystrophic EB type (DEB). The mean score on the Children's Dermatology Life Quality Index questionnaire was 11.01 [standard deviation (SD) = 7.31], with a moderate impact on HRQoL. The median and interquartile range (IQR) of the score obtained in the Quality of Life Evaluation in Epidermolysis Bullosa- Brazilian Portuguese questionnaire was 13 (IQR: 8-19), which also indicated a moderate impact on HRQoL. In the subgroup aged ≥ 17 years, schooling positively influenced HRQoL, and decreased HRQoL was directly associated with underweight nutritional status. Family income promoted HRQoL in both subgroups.
conclusionsHRQoL assessment showed that the DEB type was associated with the most severe effect. Additionally, the large impact, in < 17 years, was associated with family income, but did not present an association with nutritional status. While the severe impact on HRQoL, in ≥ 17 years, presented an association with nutritional status, family income, and education. Future research is important, to understand this population's needs, provide adequate care, and promote the best HRQoL.
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