Exploring the Impact of Epidermolysis Bullosa on Parents and Caregivers: A Cross-Cultural Validation of the Epidermolysis Bullosa Burden of Disease Questionnaire

• Published in: Clinical, Cosmetic and Investigational Dermatology
• Main Authors: Alheggi A, Alfahhad A, Bukhari A, Bodemer C
• Format: Article
• Language: English
• Published: Dove Medical Press 2024-05-01
• Subjects: burden; caregivers; epidermolysis bullosa; quality of life
• Online Access: https://www.dovepress.com/exploring-the-impact-of-epidermolysis-bullosa-on-parents-and-caregiver-peer-reviewed-fulltext-article-CCID
• ISSN: 1178-7015

Ashjan Alheggi,1 Aseel Alfahhad,2 Abrar Bukhari,1 Christine Bodemer3 1Department of Dermatology, College of Medicine, Imam Mohammad Ibn Saud Islamic University (IMSIU), Riyadh, Saudi Arabia; 2Department of Dermatology, College of Medicine, King Fahad Medical City, Riyadh, Saudi Arabia; 3Department of Dermatology, Expert Centre for Genodermatoses (MAGEC) Necker-Enfants Malades Hospital, University Paris Centre, Paris, FranceCorrespondence: Ashjan Alheggi, Department of Dermatology, College of Medicine, Imam Mohammad Ibn Saud Islamic University (IMSIU), P.O. Box 7544, Riyadh, 4233-13317, Saudi Arabia, Tel [phone], Email [e-mail]: Epidermolysis bullosa (EB) is a heterogeneous group of genetically inherited skin and mucosal fragility disorders. EB may have a profound impact on parental physical and psychosocial health. This study was designed to evaluate the disease burden in parents of patients with EB and identify out-of-pocket (OOP) expenditures for EB care in Saudi Arabia.Patients and Methods: Thirty-eight caregivers of patients with EB were recruited from the Saudi EB registry to participate. All participants completed the EB Burden of Disease (EB-BoD) questionnaire. Data were collected between May 2020 and December 2020. The sample included 10 patients with EB simplex (EBS), 10 with junctional EB (JEB), 14 with dystrophic EB (DEB), and 4 with an unknown type.Results: Mothers were the primary caregivers in 89.5% of cases. The mean EB-BoD score was 53 ± 21.5. The family-life and child’s life dimensions had the higher burden. The mean EB-BoD score observed in patients with DEB was 62.4± 16.8 versus 45.7 ± 19.42 for EBS. The EB-BoD score was correlated with the patient’s family income. Most caregivers (97.4%) reported OOP expenditure, with a mean monthly OOP expenditure of $575.5± $701.1. OOP expenses increased with the severity of the condition.Conclusion: This study highlights the need for support services for parents caring for patients with EB.Keywords: burden, caregivers, epidermolysis bullosa, quality of life