Predictors of health-related quality of life in chronically ill children and adolescents over time.

OBJECTIVE: This study aims at identifying predictors of generic health-related quality of life (HRQoL) in chronically ill children and adolescents over time. The newly developed computer-adaptive test Kids-CAT was used to assess five dimensions of HRQoL. METHODS: Longitudinal data from the Kids-CAT study on children and adolescents with asthma, diabetes and juvenile arthritis (n = 248; aged 7-17 years) were assessed at three measurement points over six months. Individual growth modeling served to investigate effects of sociodemographic, disease- and health-related as well as psychosocial factors on HRQoL dimensions Physical Well-Being (WB), Psychological WB, Parent Relations, Social Support & Peers, and School WB over time. RESULTS: Besides effects of sociodemographic variables on HRQoL dimensions Social Support & Peers as well as School WB, we found that a longer duration of the disease was associated with better Physical WB. Lower scores were found for patients with juvenile arthritis compared to those with diabetes in HRQoL dimensions Physical WB and Social Support & Peers. Disease control was positively related to Physical and Psychological WB over time. Mental health problems were negatively associated with four, and subjective health complaints with all five HRQoL dimensions over time. Parental mental health was positively related to the patients' HRQoL score in Parent Relations over time. CONCLUSIONS: HRQoL as a multidimensional construct is associated with a wide range of different factors. Pediatricians should consider potential mental health problems and subjective health complaints in their patients. Finally, parental HRQoL can affect HRQoL in chronically ill children and adolescents.

The validation of a computer-adaptive test (CAT) for assessing health-related quality of life in children and adolescents in a clinical sample: study design, methods and first results of the Kids-CAT study.

PURPOSE: Recently, we developed a computer-adaptive test (CAT) for assessing health-related quality of life (HRQoL) in children and adolescents: the Kids-CAT. It measures five generic HRQoL dimensions. The aims of this article were (1) to present the study design and (2) to investigate its psychometric properties in a clinical setting. METHODS: The Kids-CAT study is a longitudinal prospective study with eight measurements over one year at two University Medical Centers in Germany. For validating the Kids-CAT, 270 consecutive 7- to 17-year-old patients with asthma (n = 52), diabetes (n = 182) or juvenile arthritis (n = 36) answered well-established HRQoL instruments (Pediatric Quality of Life Inventory™ (PedsQL), KIDSCREEN-27) and scales measuring related constructs (e.g., social support, self-efficacy). Measurement precision, test-retest reliability, convergent and discriminant validity were investigated. RESULTS: The mean standard error of measurement ranged between .38 and .49 for the five dimensions, which equals a reliability between .86 and .76, respectively. The Kids-CAT measured most reliably in the lower HRQoL range. Convergent validity was supported by moderate to high correlations of the Kids-CAT dimensions with corresponding PedsQL dimensions ranging between .52 and .72. A lower correlation was found between the social dimensions of both instruments. Discriminant validity was confirmed by lower correlations with non-corresponding subscales of the PedsQL. CONCLUSIONS: The Kids-CAT measures pediatric HRQoL reliably, particularly in lower areas of HRQoL. Its test-retest reliability should be re-investigated in future studies. The validity of the instrument was demonstrated. Overall, results suggest that the Kids-CAT is a promising candidate for detecting psychosocial needs in chronically ill children.

Implementation of the Kids-CAT in clinical settings: a newly developed computer-adaptive test to facilitate the assessment of patient-reported outcomes of children and adolescents in clinical practice in Germany.

PURPOSE: To describe the implementation process of a computer-adaptive test (CAT) for measuring health-related quality of life (HRQoL) of children and adolescents in two pediatric clinics in Germany. The study focuses on the feasibility and user experience with the Kids-CAT, particularly the patients' experience with the tool and the pediatricians' experience with the Kids-CAT Report. METHODS: The Kids-CAT was completed by 312 children and adolescents with asthma, diabetes or rheumatoid arthritis. The test was applied during four clinical visits over a 1-year period. A feedback report with the test results was made available to the pediatricians. To assess both feasibility and acceptability, a multimethod research design was used. To assess the patients' experience with the tool, the children and adolescents completed a questionnaire. To assess the clinicians' experience, two focus groups were conducted with eight pediatricians. RESULTS: The children and adolescents indicated that the Kids-CAT was easy to complete. All pediatricians reported that the Kids-CAT was straightforward and easy to understand and integrate into clinical practice; they also expressed that routine implementation of the tool would be desirable and that the report was a valuable source of information, facilitating the assessment of self-reported HRQoL of their patients. CONCLUSIONS: The Kids-CAT was considered an efficient and valuable tool for assessing HRQoL in children and adolescents. The Kids-CAT Report promises to be a useful adjunct to standard clinical care with the potential to improve patient-physician communication, enabling pediatricians to evaluate and monitor their young patients' self-reported HRQoL.