ArticleInternational journal of women's dermatology2021
Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers.
Article in International journal of women's dermatology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed, 25 citations in OpenAlex.
- 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
- Efficacy of Oral Cicaglocal for Wound Healing and Pruritus Alleviation in Patients with Epidermolysis Bullosa: A Single-Arm Clinical Trial.Dermatology practical & conceptual · 2026Article
- The relationship between parental stress, resilience, and quality of life in parents of children with epidermolysis bullosa.Scientific reports · 2025Article
- "It's like nursing a butterfly-so delicate, difficult, and unpredictable" - challenges of nurses in caring for patients with epidermolysis bullosa: a qualitative study.Orphanet journal of rare diseases · 2025Article
- Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study.International journal of community based nursing and midwifery · 2025Article
- The impact, perceptions and needs of parents of children with epidermolysis bullosa.South African family practice : official journal of the South African Academy of Family Practice/Primary Care · 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
- "Quality of Life in Epidermolysis Bullosa" and "Epidermolysis Bullosa Burden of Disease": Italian translation, cultural adaptation, and pilot testing of two disease-specific questionnaires.Italian journal of pediatrics · 2024Article
- Exploring the Impact of Epidermolysis Bullosa on Parents and Caregivers: A Cross-Cultural Validation of the Epidermolysis Bullosa Burden of Disease Questionnaire.Clinical, cosmetic and investigational dermatology · 2024Article
- Epidermolysis bullosa in a mother-infant dyad.Oxford medical case reports · 2023Article
- 'It breaks my heart': Healthcare practitioners' caring for families with epidermolysis bullosa.Health SA = SA Gesondheid · 2023Article
- Efficacy of a Topical Formulation of Henna (Lawsonia Inermis Linnaeus) on the Itch and Wound Healing in Patients With Epidermolysis Bullosa: a Pilot Single-arm Clinical Trial.Dermatology practical & conceptual · 2022Article
- Blistering disorders and their impact on women and their families in theInternational journal of women's dermatology · 2022Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEpidermolysis bullosa (EB) is an uncommon group of inherited disorders characterized by skin blistering after friction or mechanical trauma. EB affects patients and their families physically, socially, and emotionally.
objectiveThis study aimed to assess the family quality of life of these patients using the Family Dermatology Life Quality Index (FDLQI) questionnaire.
methodsIn this cross-sectional study, we enrolled caregivers of patients with EB registered at the Molecular Dermatology Research Center, affiliated with Shiraz University of Medical Sciences, up to 2020. Participants filled out a demographic data collection form and the FDLQI questionnaire. The data were analyzed using SPSS software, version 22.
resultsOverall, 80 participants, consisting of 65 mothers (81.2%) and 15 fathers (18.7%) as primary caregivers, were enrolled in this study. The average FDLQI score was 19.88 ± 4.71. The FDLQI scores of caregivers of patients with EB simplex was significantly lower than scores observed in those with other types of EB (
conclusionFamily quality of life is affected in patients with EB. Families with lower socioeconomic status and unemployed caregivers require special attention. More studies are needed to determine the parameters involved in the quality of life of patients with EB and their families.
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