{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T05:10:47Z","timestamp":1789017047120,"version":"build-2803163510"},"reference-count":21,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T00:00:00Z","timestamp":1788998400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Juvenile idiopathic arthritis (JIA) is a chronic, painful condition that affects 1\u20132\/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\u2019 assessments of their child\u2019s 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].<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The measures\u2019 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 (\n                      <jats:italic>p<\/jats:italic>\n                      \u202f=\u202f0.06). The disease-specific JAMAR measure added incremental validity (\u0394\n                      <jats:italic>R<\/jats:italic>\n                      <jats:sup>2<\/jats:sup>\n                      \u202f=\u202f12%); however, this was observed only for the psychosocial HRQoL dimension in forecasting CarerQol.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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\u2019s condition than with generic or symptom-based proxy ratings. These findings suggest that addressing parents\u2019 perceptions of the psychosocial impact of JIA may be more relevant for improving CarerQol than focusing solely on the child\u2019s symptoms.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fpubh.2026.1876854","type":"journal-article","created":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T04:30:23Z","timestamp":1789014623000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Carer quality of life in Switzerland: a cross-sectional study of parents of children affected by juvenile arthritis"],"prefix":"10.3389","volume":"14","author":[{"given":"Matthew","family":"Kerry","sequence":"first","affiliation":[{"name":"Department of Health, Institute of Public Health, Z\u00fcrich University of Applied Sciences (ZHAW)","place":["Winterthur, Switzerland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Dey","sequence":"additional","affiliation":[{"name":"Department of Health, Institute of Public Health, Z\u00fcrich University of Applied Sciences (ZHAW)","place":["Winterthur, Switzerland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia","family":"Dratva","sequence":"additional","affiliation":[{"name":"Department of Health, Institute of Public Health, Z\u00fcrich University of Applied Sciences (ZHAW)","place":["Winterthur, Switzerland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rotraud K.","family":"Saurenmann","sequence":"additional","affiliation":[{"name":"Center for Pediatrics, Cantonal Hospital Winterthur","place":["Winterthur, Switzerland"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2026,9,10]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"84","DOI":"10.1177\/0272989X13492013","article-title":"A discrete choice experiment to obtain a tariff for valuing informal care situations measured with the CarerQol instrument","volume":"34","author":"Hoefman","year":"2014","journal-title":"Med Decis Mak"},{"key":"ref2","doi-asserted-by":"publisher","first-page":"469","DOI":"10.1007\/s40273-016-0477-x","article-title":"Measuring care-related quality of life of caregivers for use in economic evaluations: CarerQol tariffs for Australia, Germany, Sweden, UK, and US","volume":"35","author":"Hoefman","year":"2017","journal-title":"PharmacoEconomics"},{"key":"ref3","doi-asserted-by":"publisher","first-page":"1916","DOI":"10.3390\/jcm14061916","article-title":"The CarerQol instrument: a systematic review, validity analysis, and generalization reliability study","volume":"14","author":"Cejalvo","year":"2025","journal-title":"J Clin Med"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"89","DOI":"10.1186\/s12969-025-01139-7","article-title":"A roadmap for navigating child health research data sharing across Canada and beyond \u2013 building on UCAN CAN-DU","volume":"23","author":"Gerber","year":"2025","journal-title":"Pediatr Rheumatol"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"2","DOI":"10.3899\/jrheum.2025-0314.41","article-title":"What is the impact of caregiving on quality of life for parents of children with juvenile idiopathic arthritis: the UCAN CAN-DU and CURE international prospective study","volume":"52","author":"Marshall","year":"2025","journal-title":"J Rheumatol"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"129","DOI":"10.1177\/0269216307076346","article-title":"Fighting a losing battle: eating-related distress of men with advanced cancer and their female partners. 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