Health-related quality of life of Spanish children with cystic fibrosis

Abstract

PurposeTo investigate (1) the contributions of sex, age, nutritional status- and physical-fitness-related variables on health-related quality of life (HRQOL) in Spanish children with cystic fibrosis, and (2) the agreement on HRQOL between children and their parents.MethodsIn 28 children aged 6–17 years, body mass index percentile, percentage body fat, physical activity, pulmonary function, cardiorespiratory fitness, functional mobility, and dynamic muscle strength were determined using objective measures. HRQOL was measured using the revised version of the cystic fibrosis questionnaire. Simple and multiple linear regression analyses were performed to determine the variables associated with HRQOL. To assess the agreement on HRQOL between children and parents, intra-class correlation coefficients (ICCs) were calculated.ResultsGirls reported worse emotional functioning, a higher treatment burden, and more respiratory problems than boys. Greater functional mobility appeared associated with a less favourable body image and more eating disturbances. Agreement on HRQOL between children and parents was good to excellent, except for the domain of treatment burden.ConclusionsSex and age were stronger predictors of HRQOL than nutritional status- or physical-fitness-related variables. Children reported a lower treatment burden than their parents perceived them to have.

Comparison of health-related quality of life among children with cystic fibrosis and their parents in two Eastern European countries

“…As we compared our Eastern European patients' HRQOL data to the counterparts from Western Europe, the United States and Australia [21][22][23][24][25], we found similar results. In view of limitations in Eastern European CF care, it is an interesting and important notification.…”

Health related quality of life in Indian children with cystic fibrosis

“…The low correlation between the and proxy-rating in this study has also been reported previously for Physical and Emotion domains [17,18]. The domains Emotion, Treatment Burden, Social, Body Image also showed no correlation, as seen in the Spanish study and the study by Havermans, et al [20,26]. The positive association between scores in Respiration domain and spirometry [16] have also been previously reported [16,26], thereby validating CFQ-14+ showing correlation between pulmonary function and Respiration domain.…”

“…The CFQ-R is the only patient-reported outcome instrument with versions for both children and the caregivers. It has been translated into 34 languages all over the world [17][18][19][20][21]. Our objective was to use CFQ-R to assess Quality of Life (QoL) in Indian children with CF.…”

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

“…40,41 Of note, girls with CF have reported more emotional symptoms and greater pain, spend more time in the hospital than boys with a similar level of illness, [41][42][43] and have a worse prognosis than boys. [44][45][46][47][48] Our findings suggest that boys may emphasize taking responsibility for their treatments and maintaining a positive attitude, whereas some girls expressed the value of sharing responsibility for their health management with, for example, their parent or doctor.…”