Evaluation of the quality of life and associated factors of a group of children and adolescents with cystic fibrosis in the northern region of Portugal: a cross-sectional pilot study

• Main Author: Pita, O
• Publication Date: 2022
• Other Authors: Teixeira, B, Dias, CC, Almeida, P, Azevedo, I, E Silva, D
• Format: Article
• Language: eng
• Source: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Download full: https://hdl.handle.net/10216/151682

Introduction: Children/adolescents with cystic fibrosis (CF) have psychological and physical difficulties that have a severe impact on their health-related quality of life (HRQoL). Aim: To evaluate the impact of CF on HRQoL in a pediatric age sample by identifying major determinants and comparing the HRQoL reports of children and their parents. Methods: A sample of 27 children/adolescents was included in a cross-sectional observational study. Inclusion criteria were age between 4 and 18 years, diagnosis of CF, and the attendance of a caregiver in patients younger than 14 years. A questionnaire was applied to assess sociodemographic data and nutritional status. HRQoL was evaluated using the Portuguese revised version of the CF questionnaire (CFQ-R). Spearman correlations were calculated to analyze the agreement between children's and parents' reports. Spearman correlations and Mann–Whitney U tests were performed to identify associations between HRQoL domains and determinants. Results: The scores of CFQ-R domains were high, with the lowest median value being 66.67. It was found positive moderate associations between children's and parents' reports in 3 domains (P < .05): eating disturbances, body image, and respiratory symptoms. The median scores were similar in the eating disturbances (approximately 80.00) and in the respiratory symptoms (83.33). However, there is a consistent difference of 14.07 in the body image domain. Current age, physical activity, and iron were positively associated with HRQoL, whereas age at diagnosis was negatively associated. Conclusion: These findings reinforce the importance to evaluate HRQoL during childhood and adolescence and to invest in this public health theme.