Health-related Quality of Life of Macedonian Families Experiencing Cystic Fibrosis in Pediatric Practice

Abstract

Background: : Health-related quality of life (HRQoL) is a parameter that is examined in the area of clinical effectiveness. Like other chronic health conditions, paediatric cystic fibrosis (CF) impacts not only children but also their families. Aim: The present study investigates for the first time the HRQoL of children and parents in the Republic of North Macedonia. Materials and methods: The survey included 22 children (6 to 13 years of age) and their parents and 7 parents of children under 6 years of age by using the CFQ Revised and questions for current medical treatment. Results: Children (6-13 years) reported the highest score for the digestive condition (84.85), while the lowest score was given for social activity (59.74). The highest score for digestive condition was also obtained from the parents of children from 6-13 years and under age of 6. The parents of children (6-13 years) reported the lowest score (60.56) for treatment burden activity, while the lowest score (50.0) for eating condition was obtained from the parents of children under 6 years. Conclusion: Nationality and gender have no significant impact on the HRQoL parameters. The highest scores for the digestive condition, respiratory function and physical condition are in a positive correlation with the fact that enzyme, antibiotic and physical therapy are given as a standard medical care. The lowest scores of the social aspect of the CF patients indicate the need for including a psychological support and support of social workers as a part of the standard medical care of these patients.

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

“…These findings are in concordance with the results of similar studies. 29,30 In fact, C/As with CF frequently face emotional problems such as social exclusion, frequent hospitalizations, separation from family and friends, and fear of death, 17 which reflects as a higher prevalence of anxiety disorders and depression in patients with CF in comparison with a control group, 31 with consequences in their social life. Adolescents (14 years or older) reported, in this investigation, no concerns toward HRQoL in relation to gaining weight and their food habits.…”

Qualidade de vida de crianças e adolescentes com fibrose cística: uma revisão integrativa

“…CATEGORIA 1: QUALIDADE DE VIDA RELACIONADA À SAÚDE DE CRIANÇAS E ADOLESCENTES COM FIBROSE CÍSTICA Três estudos avaliaram a QVRS de crianças e adolescentes com FC (CHENEY et al, 2020;NAKOV et al, 2019;DEUS et al, 2019).…”

“…Os pais de crianças (6-13 anos) relataram a pontuação mais baixa (60,56) para a atividade de tratamento, enquanto a pontuação mais baixa (50,0) para o problema alimentar foi obtida dos pais de crianças menores de 6 anos. (NAKOV et al, 2019).…”