TY - JOUR
T1 - Factors associated with care- and health-related quality of life of caregivers of children with juvenile idiopathic arthritis
AU - Grazziotin, Luiza R.
AU - Currie, Gillian
AU - Twilt, Marinka
AU - IJzerman, Maarten J.
AU - Kip, Michelle M.A.
AU - Koffijberg, Hendrik
AU - Bonsel, Gouke
AU - Benseler, Susanne M.
AU - Swart, Joost F.
AU - Vastert, Sebastiaan J.
AU - Wulffraat, Nico M.
AU - Yeung, Rae S.M.
AU - Armbrust, Wineke
AU - van den Berg, J. Merlijn
AU - Marshall, Deborah A.
N1 - Funding Information:
DAM reports non-financial support from consultancy (Illumina) and ISPOR, and personal fees from Analytica, outside the submitted work. RSMY reports consulting fees from Novartis and Lily outside the submitted work. SV reports grants and personal fees from SOBI and Novartis during the conduct of the study. JS reports grants from SOBI and consultancy fee for Amgen, outside the submitted work. NW reports consulting fees from Novartis, Sanofi and Sobi outside the submitted work. All other authors declare that they have no competing interests. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.
Funding Information:
This project was undertaken on behalf of the UCAN CAN-DU and UCAN CURE consortia. We would like to acknowledge the following collaborators in the consortium: Marc H.A. Jansen from Utrecht; Dieneke Schonenberg and Marieke P. Gruppen from Amsterdam UMC; Elizabeth G. Legger from UMC Groningen; Shirley Tse from Hospital for Sick Children Research Institute in Toronto, Ontario; Nicole Johnson from Alberta Children’s Hospital in Calgary, Alberta; Roberta Berard from Children’s Hospital at London Health Sciences Centre in London, Ontario; Claire Le Blanc from Montreal Children’s Hospital in Montreal, Quebec; Johannes Roth from Children’s Hospital of Eastern Ontario in Ottawa, Ontario; Bianca Lang from IWK Health Centre in Halifax, Nova Scotia; Kate Neufeld from Jim Pattison Children’s Hospital in Saskatoon, Saskatchewan; and, Lori Tucker from British Columbia Children’s Hospital in Vancouver, British Columbia. Finally, the input on the interpretation and manuscript received GJ Bonsel represent his personal views and do not reflect a view from the EuroQol Executive Office, or from the EuroQol Research Foundation.
Funding Information:
This work was supported by the Canadian Institutes for Health Research (Canada) [grant number 381280]; Genome Canada (Canada) [grant number OGI-150]; ZonMw (the Netherlands); and the Reumafonds (the Netherlands).
Funding Information:
DAM is supported by the Arthur J.E. Child Chair in Rheumatology and a Canada Research Chair in Health Systems and Services Research (2008–2018). SB is supported by the Husky Energy Chair in Child and Maternal Health and the Alberta Children’s Hospital Foundation Chair in Pediatric Research. RSMY is supported by the Hak-Ming and Deborah Chiu Chair in Paediatric Translational Research. LRG is supported by Alberta Innovates Graduate Studentship.
Publisher Copyright:
© 2022, The Author(s).
PY - 2022/7/23
Y1 - 2022/7/23
N2 - 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.
AB - 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.
KW - Adolescent
KW - Adult
KW - Arthritis, Juvenile/therapy
KW - Caregivers
KW - Child
KW - Cross-Sectional Studies
KW - Female
KW - Humans
KW - Male
KW - Quality of Life
KW - Surveys and Questionnaires
UR - https://www.scopus.com/pages/publications/85135053087
U2 - 10.1186/s12969-022-00713-7
DO - 10.1186/s12969-022-00713-7
M3 - Article
C2 - 35870932
SN - 1546-0096
VL - 20
SP - 1
EP - 12
JO - Pediatric rheumatology online journal
JF - Pediatric rheumatology online journal
IS - 1
M1 - 51
ER -