In a new study, researchers have evaluated the impact of the chronic respiratory diseases asthma and cystic fibrosis (CF) in children’s perception of their quality of life and their parents’ assessment of the child’s overall well-being, measuring the correlation between clinical outcomes and perceived quality of life. The study, entitled “Health Related Quality of Life of Children with Chronic Respiratory Conditions,” was published in Advances in Clinical and Experimental Medicine.
The rationale for the study was the evolution of the management of chronic diseases from a purely clinically objective point of view to a more subjective evaluation, where patient-related health burden takes into account the perception of quality of life by the patients themselves. Researchers decided to study two chronic respiratory diseases, asthma and cystic fibrosis, and their impact on children’s physical, social and academic life, and personal well being — aspects integrated in the parameter “health related quality of life” (HRQoL). The study included 172 children, diagnosed with CF or asthma, and their parents. To assess HRQoL, the scientists used the Hungarian version of the Pediatric Quality of Life Inventory TM v. 4.0 (PedsQLTM 4.0), a score report with formats for both children and parents. Lung function was measured trough spirometry by the determination of parameters such as FEV1 (Forced Expiratory Volume during the first second), FVC (forced vital capacity) and FEF25–75% (forced expiratory flow at 25–75% of forced vital capacity).
Regarding HRQoL decline compared to the general population, both the child self-assessment and the caregivers’ assessment were considered. Results show that CF and asthma have a significant impact on children’s quality of life, with patients with CF assessing their psychological, social and emotional well-being, and also school functioning, poorer than patients with asthma, as expected due to the serious debilitating aspects of the disease. Researchers could not find significant differences between the parents’ scores of HRQoL. They theorize that this result is due to the fact that parents of children with CF are more familiar with the disease and its exacerbations, and therefore are more inclined to overestimate the child’s quality of life; while, inversely, parents of children with asthma might underestimate HRQoL, due to the scary aspect of asthma attacks. Regarding correlations between clinical outcomes and perceived quality of life, researchers found a weak correlation between asthma patients’ answers and their clinical profile, leading to the conclusion that it is difficult to assess asthma patient well-being only based on spirometry data. On the other hand, CF patients presented a good correlation between test scores and their physical results.
This study proved to be a valuable tool in the assessment of patient well-being, which can be used to optimize treatment and also inform clinicians if patients or caregivers are the best source of quality of life-related information.