Clinical, Cosmetic and Investigational Dermatology (May 2024)
Exploring the Impact of Epidermolysis Bullosa on Parents and Caregivers: A Cross-Cultural Validation of the Epidermolysis Bullosa Burden of Disease Questionnaire
Abstract
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 +447375430305, Email [email protected]: 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
