Health Related Quality of Life of Children with Chronic Respiratory Conditions

Background. In the management of chronic diseases, treatment approaches have changed in recent decades. Not only are clinical outcomes assessed but also the patients' perception of their quality of life has become an important aspect. Objectives. The aim of our study was to compare the health-related quality of life (HRQoL) of children with cystic fibrosis (CF) to the HRQoL of asthmatic patients, to assess the level of agreement between parent proxy-report and child self-report and to measure the relationship between spirometry and HRQoL. Material and Methods. 172 children (mean age: 11.61 +/- 2.56 years) and their parents completed the questionnaire. The Hungarian version of the Pediatric Quality of Life Inventory (TM) 4.0 (PedsQL (TM) 4.0) Generic Core Scale was used to assess HRQoL. Lung function was assessed via spirometry. Results. Significantly lower PedsQLTM scores were measured for CF patients on the psychosocial health (p < 0.05), emotional functioning (p < 0.005) and school functioning (p < 0.01) subscales and the total scale (p < 0.05) from the children's self-report. The level of child-parent agreement was fair and moderate in both patient populations [intra-class correlation coefficient range (ICC) asthma = 0.29-0.37; ICCCF = 0.39-0.59, p < 0.0011. The relationship between forced expiratory volume in 1 second (FEV1) and the physical health subscale (r = 0.49, p < 0.01) was moderate in young (8-12 years) children and also teenagers (13-18 years), with CF (r = 0.58, p < 0.05) from self-report. We found weak, non-significant correlations between FEV1 and PedsQLTM subscales in children with asthma (8-12 years) (r = -0.01-0.18, ns.). Conclusions. Children suffering from CF perceive their HRQoL as poorer than children with asthma. In asthmatic patients, it is not sufficient to evaluate clinical outcomes (FEV1); subjective HRQoL should be also estimated in the course of patient care