{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,18]],"date-time":"2026-10-18T18:50:25Z","timestamp":1792349425952,"version":"4.4.0"},"reference-count":15,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T00:00:00Z","timestamp":1792022400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T00:00:00Z","timestamp":1792022400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000030","name":"Centers for Disease Control and Prevention","doi-asserted-by":"publisher","award":["U01 DP006701"],"award-info":[{"award-number":["U01 DP006701"]}],"id":[{"id":"10.13039\/100000030","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Lupus"],"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Social determinants of health (SDOH) and race are associated with disease activity, including lower achievement of the low lupus disease activity state (LLDAS), but it is unknown whether these factors are associated with patient-reported outcomes (PROs). Among a cohort with childhood-onset systemic lupus erythematosus (cSLE) in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry, we investigated associations between race, SDOH, and PROs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>In this cSLE cohort study, the primary exposure was self-reported race and ethnicity with collected SDOH including insurance status and area deprivation index (ADI). Our primary outcomes were any functional disability by CHAQ (&gt;0) and overall health by PROMIS Global Health-7 across follow-up. Multivariable regression models assessed these associations, adjusting for demographic and disease-related factors.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Among 540 children with cSLE, most had CHAQ (86%) and PROMIS Global Health-7 (74%) scores collected at Registry enrollment. Functional disability was common (46%), and overall health was below average (median T score 38.8, IQR 34.0-42.1) at enrollment. In unadjusted and adjusted analyses, race, insurance, and ADI were not significantly associated with either outcome. However, PROMIS completion differed significantly by race (\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      &lt; 0.001).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Children with cSLE in the CARRA Registry commonly report deficits in functional status and overall health. Although race and SDOH were not significantly associated with PROs, differential PROMIS completion by race suggests the potential for bias in these estimates. Interventions to improve completeness and representativeness of PRO data collection are needed to support accurate assessment of health disparities in cSLE across all patient groups.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/09612033261498255","type":"journal-article","created":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T08:50:51Z","timestamp":1792054251000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["The impact of non-medical determinants of health on patient-reported outcomes in pediatric lupus: A CARRA registry study"],"prefix":"10.1177","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1873-3520","authenticated-orcid":false,"given":"William Daniel","family":"Soulsby","sequence":"first","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Rheumatology, University of California, San Francisco"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Olveda","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Palo Alto Medical Foundation Medical Group"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jie","family":"He","sequence":"additional","affiliation":[{"name":"Boston Children\u2019s Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Berbert","sequence":"additional","affiliation":[{"name":"Boston Children\u2019s Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Edie","family":"Weller","sequence":"additional","affiliation":[{"name":"Boston Children\u2019s Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura E.","family":"Schanberg","sequence":"additional","affiliation":[{"name":"Duke University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emily","family":"von Scheven","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Rheumatology, University of California, San Francisco"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aimee","family":"Hersh","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Rheumatology, University of Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7394-2862","authenticated-orcid":false,"given":"Mary Beth F.","family":"Son","sequence":"additional","affiliation":[{"name":"Boston Children\u2019s Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1691-4814","authenticated-orcid":false,"given":"Joyce C.","family":"Chang","sequence":"additional","affiliation":[{"name":"Boston Children\u2019s Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea","family":"Knight","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Rheumatology, The Hospital for Sick Children"},{"name":"University of Toronto"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,10,15]]},"reference":[{"key":"e_1_3_6_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.rdc.2016.01.001"},{"key":"e_1_3_6_3_2","doi-asserted-by":"publisher","DOI":"10.1002\/acr.22363"},{"issue":"1","key":"e_1_3_6_4_2","first-page":"186","article-title":"Race, ethnicity and patient-reported outcomes in childhood-onset systemic lupus erythematosus","volume":"41","author":"Borgia RE","year":"2023","unstructured":"Borgia RE, Gurka MJ, Filipp SL, et al. Race, ethnicity and patient-reported outcomes in childhood-onset systemic lupus erythematosus. Clin Exp Rheumatol 2023; 41(1): 186\u2013194. https:\/\/doi.org\/10.55563\/clinexprheumatol\/tn0x4k","journal-title":"Clin Exp Rheumatol"},{"key":"e_1_3_6_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.rdc.2020.07.007"},{"key":"e_1_3_6_6_2","doi-asserted-by":"publisher","DOI":"10.1002\/art.40512"},{"key":"e_1_3_6_7_2","doi-asserted-by":"publisher","DOI":"10.1002\/acr.25443"},{"key":"e_1_3_6_8_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12969-017-0160-6"},{"key":"e_1_3_6_9_2","doi-asserted-by":"publisher","DOI":"10.1002\/art.34473"},{"issue":"4","key":"e_1_3_6_10_2","first-page":"1221","article-title":"Development of the PROMIS \u00ae pediatric global health (PGH-7) measure","volume":"23","author":"Forrest CB","year":"2014","unstructured":"Forrest CB, Bevans KB, Pratiwadi R, et al. Development of the PROMIS \u00ae pediatric global health (PGH-7) measure. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 2014; 23(4): 1221\u20131231. https:\/\/doi.org\/10.1007\/s11136-013-0581-8","journal-title":"Qual Life Res Int J Qual Life Asp Treat Care Rehabil"},{"key":"e_1_3_6_11_2","doi-asserted-by":"publisher","DOI":"10.1002\/acr.20559"},{"key":"e_1_3_6_12_2","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1802313"},{"key":"e_1_3_6_13_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.rdc.2021.04.004"},{"key":"e_1_3_6_14_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13075-020-02334-5"},{"key":"e_1_3_6_15_2","doi-asserted-by":"publisher","DOI":"10.1002\/acr.80065"},{"key":"e_1_3_6_16_2","doi-asserted-by":"publisher","DOI":"10.1080\/17437199.2025.2478877"}],"container-title":["Lupus"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/09612033261498255","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/09612033261498255","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/09612033261498255","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,18]],"date-time":"2026-10-18T18:18:51Z","timestamp":1792347531000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/09612033261498255"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10,15]]},"references-count":15,"alternative-id":["10.1177\/09612033261498255"],"URL":"https:\/\/doi.org\/10.1177\/09612033261498255","relation":{},"ISSN":["0961-2033","1477-0962"],"issn-type":[{"value":"0961-2033","type":"print"},{"value":"1477-0962","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10,15]]},"article-number":"09612033261498255"}}