Quality of life in cystic fibrosis patients

Authors

  • Marta Cristina Duarte Departamento Materno Infantil, Faculdade de Medicina, Universidade Federal de Juiz de Fora, Juiz de Fora
  • José Antonio Chehuen Neto Departamento de Cirurgia, Faculdade de Medicina, Universidade Federal de Juiz de Fora, Juiz de Fora https://orcid.org/0000-0001-9640-0444
  • Maura Furtado Barbosa Felipe Faculdade de Medicina, Universidade Federal de Juiz de Fora, Juiz de Fora
  • Carolina Martins Moreira Elias Faculdade de Medicina, Universidade Federal de Juiz de Fora, Juiz de Fora
  • Alice Maria Campos Dias Faculdade de Medicina, Universidade Federal de Juiz de Fora, Juiz de Fora
  • Pedro de Freitas Batista Mendes Faculdade de Medicina, Universidade Federal de Juiz de Fora, Juiz de Fora
  • Renato Erothildes Ferreira Programa de Pós-Graduação em Saúde, Faculdade de Medicina, Universidade Federal de Juiz de Fora, Juiz de Fora

DOI:

https://doi.org/10.34019/1982-8047.2021.v47.35344

Keywords:

Cystic Fibrosis, Quality of Life, Psychosocial Impact

Abstract

Introduction: Cystic Fibrosis (CF) is a rare, hereditary, multisystemic, and potentially lethal disease.Currently,with the advancement of medicine and the emergence of new therapies, CF patients are allowed to reach 40 years of age in developed countries.Objective: To assess the quality of life (QoL) ofpatients with CF to optimize their multidisciplinary care, based on criteria that impact their well-being. Material and Methods: Cross-sectional, prospective, quantitative, and exploratory study. Forty-seven interviews were collected from patients and their parents or legal guardians at a university referral center for CF in Minas Gerais, Brazil. The evaluation method was the Cystic Fibrosis Questionnaire (CFQ), associated with the analysis of the Shwachman-KulczyckiScore (SKS). Results: Our data showed that most of the CFQ domains were satisfactory (mean>50) and the SKS had good/excellent values ​​(score>71 points) in all groups. The group of patients older than 14 years had a worse QoL.Moreover, there was a divergence between the response of the 6 to 11 and 12 to 13-year group in comparison with the response of their legal guardians (p < 0.05). Conclusion: We found satisfactory means in all groups for the weight, digestive, and respiratory domains. However, the social role, vitality, emotional, and social domains had lower and decreasing means according to advancing age, then it would beparamount a multidisciplinary approach focused on these domains that most impact theirQoL. A limitation of research on rare diseases is the small sample, therefore not being possible to generalize the results. However, the analysis is still significant and relevant, demonstrating areas of impact that need to be improved.

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Author Biography

José Antonio Chehuen Neto, Departamento de Cirurgia, Faculdade de Medicina, Universidade Federal de Juiz de Fora, Juiz de Fora

Graduado em Medicina pela Universidade Federal de Juiz de Fora (1982),possui Mestrado em Técnica Operatória e Cirurgia Experimental pela Universidade Federal de São Paulo (Unifesp -1990) e Doutorado em Técnica Operatória e Cirurgia Experimental pela Universidade Federal de São Paulo (Unifesp -1994). Atualmente é Professor Associado 2 da Universidade Federal de Juiz de Fora em Técnica Cirúrgica e Metodologia Científica, médico da Prefeitura Municipal de Juiz de Fora, médico staff em Cirurgia de Cabeça e Pescoço do Hospital Albert Sabin e do Hospital Monte Sinai. Pós-graduado Sensu Lato em Cirurgia Geral (Hospital Miguel Couto RJ ) e Cirurgia de Cabeça e Pescoço ( Hospital Heliópolis -SP). Como docente e profissional, atua principalmente nos seguintes temas: educação médica, cirurgia, gestão, estratégia educacionaAtua l e metodologia científica.

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Published

2022-02-10

How to Cite

1.
Duarte MC, Chehuen Neto JA, Furtado Barbosa Felipe M, Martins Moreira Elias C, Campos Dias AM, de Freitas Batista Mendes P, Erothildes Ferreira R. Quality of life in cystic fibrosis patients. HU Rev [Internet]. 2022Feb.10 [cited 2024Nov.25];47:1-8. Available from: https://periodicos.ufjf.br/index.php/hurevista/article/view/35344

Issue

Vol. 47 (2021)

Section

Artigos Originais

License

Copyright (c) 2022 Marta Cristina Duarte, José Antonio Chehuen Neto, Maura Furtado Barbosa Felipe, Carolina Martins Moreira Elias, Alice Maria Campos Dias, Pedro de Freitas Batista Mendes, Renato Erothildes Ferreira

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This work is licensed under a Creative Commons Attribution 4.0 International License.

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