Carer quality of life in Switzerland: a cross-sectional study of parents of children affected by juvenile arthritis.

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a chronic, painful condition that affects 1-2/1000 children in Switzerland. Care-related quality of life (CarerQol) is an important indicator in both public health and health economics studies. The purpose of the study was to examine the proxy associations between CarerQol and various measurement instruments, based on parents' assessments of their child's quality of life. These include generic global measures (EuroQol 5-Dimension, EQ-5D), generic domain-specific tools (Patient Reported Outcomes Measurement Information System, PROMIS), which evaluate depression, anxiety, fatigue, and pain interference, and disease-specific measures [health-related QoL (HRQoL) assessed using the Juvenile Arthritis Multidimensional Assessment Report, JAMAR]. METHODS: A cross-sectional design using parent surveys and clinician-reported medical information was employed. A sample of 148 parents of JIA-affected children were administered a questionnaire. HRQoL instruments were subjected to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines for structural validity and internal consistency. Demographic and clinical data, along with HRQoL measures, were analyzed through a series of hierarchical regression analyses focusing on CarerQol. RESULTS: The measures' structural validity and internal consistency according to COSMIN criteria were met. In addition to demographic and biographic data, the EQ-5D contributed incremental validity to CarerQol. Conversely, the PROMIS domains failed to add incremental validity, with only depression approaching statistical significance (p = 0.06). The disease-specific JAMAR measure added incremental validity (ΔR 2 = 12%); however, this was observed only for the psychosocial HRQoL dimension in forecasting CarerQol. CONCLUSION: We found the incremental validity of disease-specific proxy measures over generic and domain-specific instruments in association with CarerQol. Future research may extend these findings by conducting discrete choice experiments to derive tariffs for utility-based scoring of CarerQol within Switzerland. CarerQol was more strongly associated with their disease-specific psychosocial appraisal of their child's condition than with generic or symptom-based proxy ratings. These findings suggest that addressing parents' perceptions of the psychosocial impact of JIA may be more relevant for improving CarerQol than focusing solely on the child's symptoms.