Peer-reviewed article
Measuring social participation in children with chronic health conditions: validation and reference values of the child and adolescent scale of participation (CASP) in the German context
Freia De Bock, Catherin Bosle, Christine Graef, Johannes Oepen, Heike Philippi et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study validates a German version of the Child and Adolescent Scale of Participation (CASP), an instrument to measure social participation in children with chronic health conditions. The researchers tested 327 children aged around 8 years, comparing those with mild and severe chronic conditions to healthy children. The CASP was found to be reliable and valid, and better at detecting differences in participation between children with mild versus severe disease than existing health quality-of-life measures.
Key points
- The German CASP showed excellent internal consistency and good-to-excellent test-retest reliability
- Children with mild chronic disease had significantly greater participation than those with severe disease, but similar participation to healthy children
- The CASP was more sensitive at distinguishing participation differences by disease severity (ROC area 0.92) than the KINDL quality-of-life instrument (ROC area 0.75)
- A single-item measure of 'overall perceived participation' correlated highly with the full CASP score (r = 0.86)
- Reference values from 215 population-based healthy children without chronic conditions were established
Limitations
This is a validation study that measures participation outcomes but does not evaluate an intervention to improve participation. The study is cross-sectional, so it cannot demonstrate causation or track changes over time in response to treatment.
Abstract
BACKGROUND: While ICF-CY-based models of care are promising avenues for improving participation of children with chronic health conditions, feasible and valid instruments to assess participation as an outcome in routine are still needed. We aimed to validate a German parent-report version of the Child and Adolescent Scale of Participation (CASP) in children with chronic health conditions of different severity. METHODS: Cross-sectional data were collected in 327 children (mean age 7.8 years, 55% boys) from two paediatric centres (n = 112) and one population-based sample (n = 215). Cronbach's alpha, factor analyses, face validity assessments, correlation analyses, receiver operating characteristics (ROC) curves, and parent-reported health-related quality of life (HRQoL: KINDL) were used to examine internal consistency, test-retest reliability, and capacity to differentiate between disease severity groups. Disease severity was operationalized according to ICD-diagnosis groups and/or parent-reports on health problems, medical and educational support, and medication. A newly developed item "overall perceived participation" was added to the CASP and evaluated. RESULTS: We found good to excellent content validity, excellent internal consistency, and good-to-excellent test-retest reliability of the instrument. While children with mild disease had a significantly greater extent of participation (higher CASP scores) than children with severe disease, they did not differ from healthy children. Children with mild compared to severe disease much more differed in participation as measured by the CASP compared to the KINDL (area under the ROC curve: 0.92 vs. 0.75). In addition, the item "overall perceived participation" was highly correlated (r = 0.86) with the CASP total score, indicating the potential value of this specific single item. Finally, we provided preliminary reference values for the CASP obtained in a population-based sample of children without chronic health conditions. CONCLUSIONS: The German version of the CASP and the new item are efficient, valid and reliable measures of social participation in childhood. The CASP-measured participation focuses more on attendance than on involvement into social circumstances of everyday life. To detect children with a high burden of disease on everyday life, the CASP may be more accurate than HRQoL instruments such as the KINDL. As outcome measurement, the CASP may facilitate the implementation of patient-centred paediatric health care.