ArticleOrphanet journal of rare diseases2025
The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens and helpful aspects from a patients' perspective.
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 7 papers.
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Who cites it
7 citing papers in PubMed.
- The puzzling effect of disease severity on quality of life in epidermolysis bullosa.Journal of the European Academy of Dermatology and Venereology : JEADV · 2026Article
- Tips for Independent Living Despite Recessive Dystrophic Epidermolysis Bullosa: My Perspective.Pediatric dermatology · 2026Article
- 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 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
- The relationship between parental stress, resilience, and quality of life in parents of children with epidermolysis bullosa.Scientific reports · 2025Article
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Authors and funding
4 authors.
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No grant is acknowledged in the PubMed record.
Abstract
backgroundEpidermolysis bullosa (EB) is a serious, painful, hereditary and still incurable genetic condition. Due to blistering or wounds on the skin caused by the slightest touch, a person suffering from epidermolysis bullosa is prevented from achieving the same quality of life as a healthy person. Until now, psychosocial research has focused on the description of the problems of people living with the disease.
objectivesThe aim of this paper is to provide a structured overview of potential psychosocial effects of epidermolysis bullosa on the everyday lives of people with the condition and to explore helpful aspects for coping with EB.
methodsSemi-structured interviews with persons living with EB were conducted. Analyses were based on a combination of a reflexive grounded theory approach and a structured coding guide. By means of purposive sampling across three countries, a high diversity within the sample was achieved in order to obtain a wide range of possible effects.
resultsA total of 17 individuals living with EB across all EB types were interviewed, resulting in 36,315 words being analysed. Psychosocial aspects of EB comprise physical, emotional, social, and functional dimensions. Identified burdens and helpful aspects in dealing with EB are described along this structure.
conclusionsOur results highlight the broad range of possible psychosocial effects caused by epidermolysis bullosa. It is particularly important to recognise those affected as individuals with their personal needs and to avoid unnecessary strains. Furthermore, emotional support is crucial in every respect.
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