The Impact of Caring for Juvenile Idiopathic Arthritis Patients on Caregivers’ Quality of Life
Author(s)
Ana C. Fuhrmann, PhD1, Deborah A. Marshall, PhD1, Rodrigo Dal Ben, PhD1, Gillian R. Currie, PhD1, Rae SM Yeung, PhD2, Sebastian J Vastert, PhD3, Nico Wulffraat, PhD3, Joost F. Swart, PhD3, Susanne Benseler, PhD1;
1University of Calgary, Calgary, AB, Canada, 2University of Toronto, Toronto, ON, Canada, 3University Medical Centre Utrecht, Utrecht, Netherlands
1University of Calgary, Calgary, AB, Canada, 2University of Toronto, Toronto, ON, Canada, 3University Medical Centre Utrecht, Utrecht, Netherlands
Presentation Documents
OBJECTIVES: Juvenile Idiopathic Arthritis (JIA) affects patients and their families, increasing caregiving burden and decreasing caregivers’ quality of life. We assessed the care-related quality of life (CRQoL) of JIA patients’ caregivers and its relationship with demographic and clinical factors.
METHODS: The prospective, multicentre Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN-DU/CURE) study captures caregiver-reported data from Canadian and Dutch families, including the standardized CarerQol questionnaire measuring CRQoL. The analytic sample included all participants with a completed CarerQol measure at baseline, with data collected between July/2019 and September/2024. Linear regression models explored associations between CarerQol utility (0= worst caregiving situation, 100= best) and well-being visual analog scale (VAS) (0= completely unhappy, 10= completely happy) with demographic and clinical factors. The factors were included using a stepwise process, and final model selected via Akaike-Information-Criteria for model fit.
RESULTS: 504 caregivers were included. At baseline, the average CarerQol utility was 81.4 (SD=11.2), with a median of 84.2 (IQR=76.7-88.2). The average VAS was 7.3 (SD=1.7), with a median of 7.6 (IQR=6.5-8.5). Over 40% of caregivers reported problems with physical health, mental health, and daily activities, while less than 20% reported financial and relational issues. Most caregivers (92.3%) felt fulfillment and 79.6% reported having support. In the final regression model, caregivers of male children, who reported mental health conditions, and receiving extra help had lower CarerQol utility (all p<0.05). Lower VAS was associated with male children, age >10-years, musculoskeletal symptoms, other comorbidities, living in the Netherlands, and caregivers with mental health conditions, physical health conditions, receiving extra help, and with a partner with mental health conditions (all p<0.05).
CONCLUSIONS: Our results highlight the challenges of caregivers of children with JIA, particularly in mental and physical health, emphasizing the need for targeted interventions that enhance quality of life and provide caregivers with sustained support systems.
METHODS: The prospective, multicentre Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN-DU/CURE) study captures caregiver-reported data from Canadian and Dutch families, including the standardized CarerQol questionnaire measuring CRQoL. The analytic sample included all participants with a completed CarerQol measure at baseline, with data collected between July/2019 and September/2024. Linear regression models explored associations between CarerQol utility (0= worst caregiving situation, 100= best) and well-being visual analog scale (VAS) (0= completely unhappy, 10= completely happy) with demographic and clinical factors. The factors were included using a stepwise process, and final model selected via Akaike-Information-Criteria for model fit.
RESULTS: 504 caregivers were included. At baseline, the average CarerQol utility was 81.4 (SD=11.2), with a median of 84.2 (IQR=76.7-88.2). The average VAS was 7.3 (SD=1.7), with a median of 7.6 (IQR=6.5-8.5). Over 40% of caregivers reported problems with physical health, mental health, and daily activities, while less than 20% reported financial and relational issues. Most caregivers (92.3%) felt fulfillment and 79.6% reported having support. In the final regression model, caregivers of male children, who reported mental health conditions, and receiving extra help had lower CarerQol utility (all p<0.05). Lower VAS was associated with male children, age >10-years, musculoskeletal symptoms, other comorbidities, living in the Netherlands, and caregivers with mental health conditions, physical health conditions, receiving extra help, and with a partner with mental health conditions (all p<0.05).
CONCLUSIONS: Our results highlight the challenges of caregivers of children with JIA, particularly in mental and physical health, emphasizing the need for targeted interventions that enhance quality of life and provide caregivers with sustained support systems.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR105
Topic
Patient-Centered Research
Topic Subcategory
Health State Utilities, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal), SDC: Pediatrics