Keywords
Psychosocial Impact
Quality of Life
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Abstract
Objective: To assess the psychosocial impact of epidermolysis bullosa on the quality of life of individuals with the disease and their parents and caregivers. Methods: It is an integrative literature review, in which the guiding question was: “What are the psychosocial impacts of epidermolysis bullosa on quality of life?”. The bibliographic search was carried out in theNational Library of Medicine (PubMed/MEDLINE), Scientific Electronic Library Online (SciELO), Latin American and Caribbean Health Science Literature (LILACS) and Web of Science databases, using the descriptors “Epidermolysis Bullosa”, “Psychosocial Impact” and “Quality of Life”. Thirteen articles were selected between 2017 and 2024. Results: The psychosocial impacts of epidermolysis bullosa on quality of life were observed in three aspects.In terms of social interactions, the isolation of those with the disease was noted, due to the difficulty in carrying out daily activities.As a psychological burden, there were feelings of guilt, helplessness and physical and emotional exhaustion among parents and discomfort and embarrassment among sufferers. In terms of socio-professional dynamics, most of the parents gave up their jobs, while the patients faced challenges in gaining employment. Final considerations: Epidermolysis bullosa is responsible for various negative psychosocial impacts on quality of life, both at an individual level and within the family unit.
References
ALHEGGI A, et al. Exploring the Impacto f Epidermolysis Bullosa on Parents and Caregivers: A Cross-Cutural Validation of the Epidermolysis Bullosa Burden of Disease Questionnaire. Clin Cosmet Investig Dermatol, 2024; 17:1027-1032.
ARANDA-RENEO I, et al., 2024). Economic burden and health-related quality of life in patients with epidermolysis bullosa in Spain. Orphanet J Rare Dis, 2024; 19(1):352.
BRUCKNER AL, et al. The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers. Orphanet J Rare Dis, 2020; 15(1):1.
BRUN J, et al. Pain and quality of life evaluation in patients with localized Epidermolysis bullosa simplex. Orphaned Journal of Rare Diseases, 2017; 12(1):119.
CAPRARA A, VERAS MSC. Hermenêutica e Narrativa: a experiência de mães de crianças com epidermólise bolhosa congênita. Interface – Comunicação, Saúde, Educação, 2005; 9(16):131-146.
CHATEAU AV, et al. The impact, perceptions and needs of parents of children with epidermolysis bullosa. S Afr Fam Pract (2004), 2024; 16;66(1):5993.
CHOGANI F, et al. Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers. Int J Womens Dermatol, 2021; 7(5Part B):721-726.
HAS, C. et al. Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility. British Journal of Dermatology, 2020; 183(4).
KHANNA D, BARDHAN A. Epidermolysis Bullosa. StatPearls, 2024
MANOMY PA, et al. Impact of a psychodermatological education package on the subjective distress, family burden, and quality of life among the primary caregivers of children affected with epidermolysis bullosa. Indian Dermatology Online Journal, 2021; 12(2):276.
MARIATH LM, et al. Inherited epidermolysis bullosa: update on the clinical and genetic aspects. Anais Brasileiros de Dermatologia, 2020; 95(5):551–569.
MARTÍNEZ-RIPOLL JM, et al. Epidermolysis Bullosa in Spain: A Qualitative Analysis of Its Social Impact on Families With Diagnosed Minors. Health Expect, 2024; 27(4):e14128.
PFENDNER EG, BRUCKNER AL. Epidermolysis Bullosa Simplex. University of Washington, Seattle, Seattle (WA), 2022.
RODRIGUES CML, et al. Fatores de Risco e Riscos Psicossociais no Trabalho: Definição e Implicações. Psicologia: Teoria e Pesquisa, 2020; v.36.
SALAMOM G, et al. The psychosocial impact of chronic disease in Ireland: Burdens and helpful practices for a life with Epidermolysis Bullosa. Health Expectations, 2024; 27:e14088.
SALAMON G, et al. Facing the complex challenges of people with epidermolysis bullosa in Austria: a mixed methods study on burdens and helpful practices. Orphanet J Rare Dis, 2024; 19(1):211.
SANGHA N, et al. Psychosocial impact of epidermolysis bullosa on patients: A qualitative study. Pediatr Dermatol, 2021; 38(4):819-824.
ŠTUBLAR A, et al. Inherited epidermolysis bullosa: epidemiology and patient care in Slovenia with a review of the updated classification. Acta dermatovenerologica Alpina, Pannonica, et Adriatica, 2021; 30(2):63–66.
SILVA CB, et al. Vivências de mães no cuidado a crianças e adolescentes com Epidermólise Bolhosa. Escola Anna Nery, 2023; v.27.
SILVA RA, et al. A vivência do cuidado materno a uma lactente com epidermólise bolhosa. Revista de Enfermagem do Centro-Oeste Mineiro, 2020; v.10.
SO JY, et al. A global, cross-sectional survey of patient-reported outcomes, disease burden, and quality of life in epidermolysis bullosa simplex. Orphanet J Rare Dis, 2022; 17(1):270.
THIEN CI, et al. Hereditary epidermolysis bullosa: clinical-epidemiological profile of 278 patients at a tertiary hospital in São Paulo, Brazil. Anais brasileiros de dermatologia, 2024; 99(3):380–390.
WU Y-H, et al. Family caregivers’ lived experiences of caring for epidermolysis bullosa patients: A phenomenological study. J Clin Nurs. 2020;29(9-10):1552-1560.
YUEN WY, et al. Health-related quality of life in epidermolysis bullosa: Validation of the Dutch QOLEB questionnaire and assessment in the Dutch population. Acta Derm Venereol. 2014; 94(4):442-447.