ArticleOrphanet journal of rare diseases2024
Facing the complex challenges of people with epidermolysis bullosa in Austria: a mixed methods study on burdens and helpful practices.
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.
- The Economic Burden of Epidermolysis Bullosa: A Scoping Review.Dermatology (Basel, Switzerland) · 2026Review
- Social participation of patients with epidermolysis bullosa: barriers and facilitators in education, employment, and economic life - a biographic interview study.Orphanet journal of rare diseases · 2026Article
- Interdisciplinary Approach in Pediatric Patients With Recessive Dystrophic Epidermolysis Bullosa: Experience From the Dermatology Service and the Palliative Care and Complex Chronic Patient Team at Sant Joan de Déu Hospital (Barcelona, Spain).Journal of evaluation in clinical practice · 2026Article
- The lived experience and supportive care needs of Australian parents caring for children with Epidermolysis Bullosa: a qualitative descriptive analysis.Orphanet journal of rare diseases · 2025Article
- The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens and helpful aspects from a patients' perspective.Orphanet journal of rare diseases · 2025Article
- Assessing Quality of Life in Patients with Epidermolysis Bullosa in the Saudi Population: Validation of the QOLEB Questionnaire.Clinical, cosmetic and investigational dermatology · 2025Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundWith approximately 500 people affected in Austria, epidermolysis bullosa (EB) is a rare genetic skin disease reducing the quality of life of those affected and their relatives. The intensive efforts of the patient organisation DEBRA Austria during the last decades have led to a unique situation of those affected and their relatives, with increased support and broader knowledge about the disease in the general population. The aim of the study is to evaluate the current situation of patients and their relatives living in Austria, with a focus on burdens and helpful practices.
resultsThe mixed-methods study consisted of two parts: a qualitative interview study to identify psychosocial aspects of EB in those affected and their relatives, and a subsequent online survey to further assess those aspects in a larger sample, resulting in a total of n=78 Austrian participants. The impact of EB on the quality of life of EB patients and their relatives in Austria is related to the current health status, psychological burden, mobility, visibility, financial situation as well as job prospects. Personal and social resources and external support have a significant influence on the individual situation.
conclusionsThe outcome is mapped to concrete implications regarding targeted support for EB patients and their relatives on an individual level and their needs in regard to the Austrian health care system.
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Registered trials
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