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Comparing Proxy, Adolescent and Adult Assessments of Functional Ability in Adolescents with Juvenile Idiopathic Arthritis

Shoop-Worrall, SJW; Hyrich, KL; Verstappen, SM; Sergeant, JC; Baildam, E; Chieng, A; Davidson, J; ... McDonagh, JE; + view all (2020) Comparing Proxy, Adolescent and Adult Assessments of Functional Ability in Adolescents with Juvenile Idiopathic Arthritis. Arthritis Care and Research , 72 (4) pp. 517-524. 10.1002/acr.23877. Green open access

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Abstract

OBJECTIVE: In paediatric research, investigators rely on proxy reports of outcome, such as the proxy-completed Childhood Health Assessment Questionnaire (P-CHAQ), to assess function in JIA. As children mature, they may self-complete the adult Health Assessment Questionnaire (HAQ) or the un-validated adolescent-specific CHAQ (A-CHAQ). It is unclear how these measures compare and whether they are directly interchangeable. METHODS: Adolescents aged 11 to 17 years participating in the Childhood Arthritis Prospective Study, a UK multicentre inception cohort, were included. In a CAPS sub-study, adolescents self-completed the A-CHAQ and HAQ and proxies simultaneously completed the P-CHAQ at baseline and one year. Correlation and agreement between scores were assessed at baseline. Agreement and ability to similarly classify clinically important changes over time were assessed at one year following initial presentation to rheumatology. RESULTS: 107 adolescents (A-CHAQ and HAQ) or their proxies (P-CHAQ) had completed all three measures at baseline. Median age at diagnosis was 13 years and 61% were female. Although the three scores demonstrated strong correlations (r>0.8), they were not completely interchangeable, with agreement ranging between 70 and 80%. There was similar agreement between the changes in scores between baseline and one year. Using P-CHAQ minimal clinically important cut-offs, the A-CHAQ and HAQ similarly classified 80 to 90% of adolescents as having improved or worsened. CONCLUSION: Whilst there is relatively high agreement and similar classification of change between HAQ and two CHAQ scores, these are not completely interchangeable. This impacts the comparison of function when measured in different ways over the lifespan. This article is protected by copyright. All rights reserved.

Type: Article
Title: Comparing Proxy, Adolescent and Adult Assessments of Functional Ability in Adolescents with Juvenile Idiopathic Arthritis
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1002/acr.23877
Publisher version: http://doi.org/10.1002/acr.23877
Language: English
Additional information: © 2019, The Authors. Arthritis Care & Research published by Wiley Periodicals, Inc. on behalf of American College of Rheumatology. This is an open access article under the terms of the Creative Commons Attribution Licenses and conditions (http://creativecommons.org/licenses/by/4.0/).
Keywords: Adolescent Rheumatology, Functional Ability, Juvenile Idiopathic Arthritis
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Infection, Immunity and Inflammation Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10071545
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