Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers

Fatemeh Chogani; Mohammad Mahdi Parvizi; Dedee F Murrell; Farhad Handjani

doi:10.1016/j.ijwd.2021.08.007

Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers

Int J Womens Dermatol. 2021 Aug 26;7(5Part B):721-726. doi: 10.1016/j.ijwd.2021.08.007. eCollection 2021 Dec.

Authors

Fatemeh Chogani^{1

2}, Mohammad Mahdi Parvizi², Dedee F Murrell³, Farhad Handjani^{2

4}

Affiliations

¹ Student Research Committee, Shiraz University of Medical Sciences, Shiraz, Iran.
² Molecular Dermatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.
³ The George Institute for Global Health, University of New South Wales, Sydney, Australia.
⁴ Department of Dermatology, School of Medicine, Shiraz University of Medical Sciences, Shiraz, Iran.

Abstract

Background: Epidermolysis 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.

Objective: This study aimed to assess the family quality of life of these patients using the Family Dermatology Life Quality Index (FDLQI) questionnaire.

Methods: In 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.

Results: Overall, 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 (p < .001). There was a significant positive association between the number of patients with EB in the family and FDLQI score (p = .049). FDLQI scores were lower in caregiving mothers who had a higher education (p < .001) and those who were employed (p < .001).

Conclusion: Family 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.

Keywords: Quality of life; epidermolysis bullosa; skin disease.