Abstract
Introduction: The improvement-or at least maintenance-of health-related quality of life (HRQoL) in children and adolescents is one of the main aims of chronic disease care. This study examines HRQoL of children and adolescents with three different chronic conditions (i.e., diabetes mellitus, asthma, juvenile arthritis) using the computer-adaptive test Kids-CAT, comprising five HRQoL domains: physical well-being, psychological well-being, parent relations, social support and peers, and school well-being. Further, associations between HRQoL and distinct clinical data and medical assessments are investigated to explore how much variability of the five domains can be explained by these variables. Methods: Cross-sectional data of the Kids-CAT study was analyzed. The Kids-CAT was used in two outpatient clinics in northern Germany gathering data on self-reported HRQoL in n = 309 children and adolescents aged 7-17 years. Additionally, general patient information, clinical data, and pediatrician-reported medical assessments were measured. Multiple regression analyses were conducted to explore associations between HRQoL and selected variables (i.e., disease duration, co-morbidity, disease control, overall health status). Results: Overall, self-reported HRQoL in all five domains were comparable to data of an age- and sex-matched reference population. Results of regression analyses indicated that the investigated variables only minimally explain variance in the five Kids-CAT domains. Sociodemographic, clinical data, and medical assessments explained 18.4% of the variance in physical well-being, 10.7% in psychological well-being, and < 10% of the variance in parent relations, social support and peers, and school well-being. Conclusion: Sociodemographic data, disease duration, co-morbidity, and medical assessments, such as disease control or pediatrician-assessed overall health status show low association with HRQoL of children and adolescents with chronic conditions. Data on self-reported HRQoL delivers valuable information on children's well-being and can improve healthcare professionals' understanding of the subjective well-being of their young patients. The implementation of tools like the Kids-CAT can facilitate the identification of potential problem areas, which should enable healthcare professionals to better address specific healthcare needs.
| Original language | English |
|---|---|
| Article number | 17 |
| Journal | Frontiers in Pediatrics |
| Volume | 7 |
| Issue number | FEB |
| DOIs | |
| Publication status | Published - 05.02.2019 |
Funding
Our special thanks goes to all children and adolescents, their parents and to pediatricians who participated in the Kids-CAT study. We thank our research team, the Kids-CAT Study Group: UR-S (PI), MR, UT, S. Schmidt, MK, DB, CO, A.-K. Meyrose, J. Devine, SN, A. Mierke, F. Fischer, OW, KF, K. Gulau, S. von Sengbusch, A. Knaak, T. Ankermann, A. Bünte, and H. Muehlan. Furthermore, we thank the Federal Ministry of Education and Research for funding this research project. We acknowledge support from the German Research Foundation (DFG) and the Open Access Publication Fund of Charité-Universitätsmedizin Berlin. The Kids-CAT study was funded by the German Federal Ministry of Education and Research (Grant Number: 0010-01GY1111, Project title: Quality of Life in Chronically Ill Children: Development and Validation of Computer-Adaptive Testing in Routine Pediatric Care, PI: Prof. Dr. UR-S, University Medical Center Hamburg-Eppendorf).
