NUMERO: #20240023

Título: INSIGHTS INTO THE QUALITY OF LIFE OF EPIDERMOLYSIS BULLOSA PATIENTS

Nome do Apresentador: Rebeca Ferreira BADARÓ

Categoria do Trabalho: Painel de pesquisa científica (PPC)

Área Temática: Dermatologia

Resumo: Objective: To evaluate the impact of Epidermolysis Bullosa (EB) on quality of life using the general score of the Quality of Life Assessment in Epidermolysis Bullosa (QoLEB) questionnaire.
Study Design: Quality of life data were collected using a standardized questionnaire comprising 17 questions, each offering 4 standard responses. Responses were scored from 0 (no impact) to 3 (severe impact), with a maximum score of 51 points.
Results: The sample comprised a total of 7 individuals with recessive dystrophic EB and 6 with simple EB. Among them, 6 individuals obtained a moderate or severe score, of which 66.67% had recessive dystrophic EB and 57.15% of very mild or mild scores were in the simple EB type. Factors contributing most to the questionnaire score included sports participation, pain, financial burden, and discomfort in public.
Conclusion: EB exhibited varying degrees of impact on quality of life, with recessive dystrophic EB showing greater impact compared to simple EB.

Autor 1:  Rebeca Ferreira BADARÓ

E-mail 1:  [email protected]

Autor 2:   Gabriel Marim RONI

E-mail 2:  [email protected]

Autor 3 :  Rosalie Matuk Fuentes TORRELIO

E-mail 3:  [email protected]

Autor 4:  Letícia Nogueira da GAMA-DE-SOUZA

E-mail 4:  [email protected]