SynthesisQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2020
Quality of life in people with epidermolysis bullosa: a systematic review.
Synthesis in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it, 55 citations in OpenAlex.
- Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa.Orphanet journal of rare diseases · 2023Guideline
- Mesenchymal stromal cell infusions of umbilical cord-derived mesenchymal stromal cells in children with Recessive Dystrophic Epidermolysis Bullosa (MissionEB): a qualitative sub study of a randomised, double-blind, placebo controlled, crossover, phase 3 trial.Orphanet journal of rare diseases · 2026Trial
- Health-Related Quality of Life of Patients withJournal of market access & health policy · 2026Article
- Epidermolysis Bullosa Classification and Current Approach to Diagnosis.Pediatric dermatology · 2026Review
- Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Health-related quality of life in recessive dystrophic epidermolysis bullosa: findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES).Orphanet journal of rare diseases · 2026Article
- Article
- Oral health of patients with epidermolysis bullosa compared to healthy controls - a retrospective study from a specialized center.BMC oral health · 2025Article
- An International Online Survey on Oral Hygiene Issues in Patients with Epidermolysis Bullosa.Dentistry journal · 2025Article
- Health-related quality-of-life evaluation in epidermolysis bullosa: a scoping review protocol.Systematic reviews · 2025Article
- The health-related quality of life of Brazilians with epidermolysis bullosa.Orphanet journal of rare diseases · 2025Article
- Health challenges and importance of using photobiomodulation therapy in patients with epidermolysis bullosa: a cross-sectional study.Lasers in medical science · 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
- Article
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Correlation between measured oral health and oral health-related quality of life in people with epidermolysis bullosa: a prospective cohort study.BMC oral health · 2024Article
- Facing the complex challenges of people with epidermolysis bullosa in Austria: a mixed methods study on burdens and helpful practices.Orphanet journal of rare diseases · 2024Article
- Oleogel-S10 in Dystrophic Epidermolysis Bullosa: A Case Series Evaluating the Impact on Wound Burden Over Two Years.Advances in therapy · 2024Article
- CRISPR-Cas9-based non-viral gene editing therapy for topical treatment of recessive dystrophic epidermolysis bullosa.Molecular therapy. Methods & clinical development · 2023Article
- Patients' and parents' experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study.Orphanet journal of rare diseases · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 3 institutions in 2 countries.
Funding
Abstract
purposeIndividuals with epidermolysis bullosa (EB) present with various clinical manifestations of different severities that affect quality of life (QoL). This systematic review synthesizes the current evidence about the QoL of individuals with EB.
methodsWe included observational studies with people of all age groups, both sexes, and any EB type. Studies with qualitative methodology, chapters of books, meeting proceedings, and abstracts were excluded.
resultsIn this study, 12 articles comprising 745 individuals were included. More than half of the articles observed lower QoL in individuals with recessive dystrophic EB (RDEB) or junctional EB (JEB). Three articles indicated that EB affected QoL more in women than in men, and one article identified that children with EB suffered more than adults with the disease. Pain was frequently reported. Seven articles identified difficulty in sports, two identified a need for bathing assistance, and three identified eating difficulties. Additionally, participants reported that family relationships and friendships were affected, and they experienced feelings of anxiety and depression. Some of the instruments used evaluated QoL in general dermatologic conditions, and one was specific to EB.
conclusionQoL is more affected in people who have RDEB and JEB. Regarding sex and age, women and children need special care in their monitoring. It is necessary that guidelines on pain management be more disseminated and put into practice. Future studies should use standardized specific instruments to assess the QoL in EB individuals, while considering the particularities of the different age groups.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.