Factors associated with care- and health-related quality of life of caregivers of children with juvenile idiopathic arthritis

Luiza R. Grazziotin, Gillian Currie, Marinka Twilt, Maarten J. IJzerman, Michelle M.A. Kip, Hendrik Koffijberg, Gouke Bonsel, Susanne M. Benseler, Joost F. Swart, Sebastiaan J. Vastert, Nico M. Wulffraat, Rae S.M. Yeung, Wineke Armbrust, J. Merlijn van den Berg, Deborah A. Marshall*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Objective: This study investigates the relationship of child, caregiver, and caring context measurements with the care-related quality of life (CRQoL) and health-related quality of life (HRQoL) of caregivers of children with juvenile idiopathic arthritis (JIA). Methods: We performed a cross-sectional analysis of baseline data on caregivers of children with JIA from Canada and the Netherlands collected for the “Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases” study from June 2019 to September 2021. We used the CRQoL questionnaire (CarerQoL), adult EQ-5D-5L, and proxy-reported Youth 5-Level version of EuroQoL (EQ-5D-5L-Y) to assess caregiver CRQoL, caregiver HRQoL, and child HRQoL, respectively. We used a multivariate analysis to assess the relationship between both caregiver CRQoL and HRQoL and patient, caregiver, and caring context measurements. Results: A total of 250 caregivers were included in this study. Most of the caregivers were from the Netherlands (n = 178, 71%) and 77% were females (n = 193). The mean CarerQoL scores was 82.7 (standard deviation (SD) 11.4) and the mean EQ-5D-5L utility score was 0.87 (SD 0.16). Child HRQoL and employment had a positive relationship with both caregiver CarerQoL and EQ-5D-5L utility scores (p < 0.05), while receiving paid or unpaid help had a negative relationship with both scores (p < 0.05). Conclusion: Our findings indicated that to understand the impact of JIA on families, we need to consider socio-economic factors, such as employment and support to carry caregiving tasks, in addition to child HRQoL.

Original languageEnglish
Article number51
Pages (from-to)1-12
Number of pages12
JournalPediatric Rheumatology
Volume20
Issue number1
Early online date23 Jul 2022
DOIs
Publication statusE-pub ahead of print/First online - 23 Jul 2022

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