Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives

• Autor(a) principal: Santana, Nelbe Nesi
• Data de Publicação: 2018
• Outros Autores: Chaves, Célia Regina Moutinho de Miranda, Campos, Daniel de Souza, Gonçalves, Christine Pereira, Gomes Junior, Saint Clair dos Santos
• Tipo de documento: Artigo
• Idioma: por
• Título da fonte: Revista Brasileira de Qualidade de Vida
• Texto Completo: https://periodicos.utfpr.edu.br/rbqv/article/view/7587
• topic: 4.06.00.00-9 Saúde Coletiva; Fibrose cística; Qualidade de vida; Doença pulmonar obstrutiva crônica.; Cystic fibrosis; Quality of life; Chronic obstructive pulmonary disease.

OBJECTIVE: To evaluate the perception of quality of life (QOL) in children with cystic fibrosis (CF) and their caregivers and compare the results between these groups.METHODS: A cross-sectional, descriptive study where children and adolescents between 6 and 13 years of age with a confirmed diagnosis of CF were included. Those with a neurological condition that made it impossible to complete the QOL questionnaire were excluded. The evaluation of the QOL was performed through the CF Questionnaire, through the total score and score of each domain, being: physical, image, digestive, respiratory, emotional, social, feeding, treatment, vitality, health, social role and weight. To compare the result between the two groups, the Mann-Whitney test was performed.RESULTS: Twenty-four children, 10.86 ± 1.9 years old, 29.2% male, 47.83% colonized by Pseudomonas aeruginosa and 26.09% homozygous for the F508del mutation participated in the study. When assessing the perception of QOL by children, the feeding and treatment domains reached the highest values. By the caregivers, the physical domain was the most scored. The value reached by patients and caregivers in the total score was 73.94% and 73.86% of predicted, respectively. When assessing the agreement between the groups, there was only a statistically significant difference in the emotional and treatment domains.CONCLUSIONS: The different perceptions found point out the need to perceive that caregivers and patients experience the disease differently in the emotional and treatment domains. This understanding is important for the treatment, since it affects the QOL.