TRAJECTORIES OF PARENTS’ CARE-RELATED QUALITY OF LIFE IN CHILDHOOD ARTHRITIS: IMPLICATIONS FOR SUPPORTIVE RESOURCE ALLOCATION
Author(s)
Ana C. Fuhrmann, PhD1, Rodrigo Dal Ben, PhD1, Gillian R. Currie, PhD1, Susanne M. Benseler, PhD1, Rae SM Yeung, PhD2, Joost F. Swart, PhD3, Nico Wulffraat, PhD3, Sebastian J Vastert, PhD3, Deborah A. Marshall, PhD1;
1University of Calgary, Calgary, AB, Canada, 2University of Toronto, Toronto, ON, Canada, 3University Medical Center Utrecht, Utrecht, Netherlands
1University of Calgary, Calgary, AB, Canada, 2University of Toronto, Toronto, ON, Canada, 3University Medical Center Utrecht, Utrecht, Netherlands
OBJECTIVES: Parents of children with juvenile idiopathic arthritis (JIA) often face substantial caregiving demands. Identifying at-risk families for worse care-related quality of life (CRQoL) is essential to inform efficient allocation of supportive resources. This study identified longitudinal trajectories in CRQoL and associated factors among parents during the first year after children’s JIA diagnosis.
METHODS: We analyzed data from the Understanding Childhood Arthritis Network Canada-Dutch collaboration (UCAN CAN-DU), a prospective multicenter study across all pediatric rheumatology clinics in Canada and the Netherlands. The sample included children <18 years with new-onset JIA and parents who completed the CarerQol questionnaire at least twice in the first-year post-diagnosis (July/2019-September/2025). CarerQol generates utility scores (0=worst; 100=best). Growth Mixture Models (1-5 latent classes) were evaluated using Akaike and Bayesian Information Criterion, average posterior probabilities (>0.90), and non-overlapping 95% confidence intervals (CI). Logistic regression identified factors associated with low-CRQoL trajectory.
RESULTS: Among 531 parents, 84% were mothers, 58% resided in the Netherlands, the mean age was 41 years, and 55% were employed. Children were 62% female, median age 10 years, and 69% had moderate/high disease activity at baseline. A 2-class model best described parental CRQoL: most maintained consistently high CRQoL, while a smaller group exhibited persistently low and flat CRQoL. Being in the low-CRQoL trajectory was strongly associated with parents’ mental health conditions (OR=9.15;95%CI= 3.73-22.35), combined mental and physical health conditions (OR=12.55;95%CI= 6.10-26.59), and caring for children with moderate/high disease activity (OR=2.05;95%CI=1.09-3.99).
CONCLUSIONS: Parents of children with JIA followed two CRQoL trajectories in the first-year post-diagnosis. Parental health and child disease activity were key factors associated with lower CRQoL. These results represent an important first step toward early identification of at-risk parents, enabling targeted psychosocial support and resource allocation to improve parents’ well-being and mitigate economic and health system burdens.
METHODS: We analyzed data from the Understanding Childhood Arthritis Network Canada-Dutch collaboration (UCAN CAN-DU), a prospective multicenter study across all pediatric rheumatology clinics in Canada and the Netherlands. The sample included children <18 years with new-onset JIA and parents who completed the CarerQol questionnaire at least twice in the first-year post-diagnosis (July/2019-September/2025). CarerQol generates utility scores (0=worst; 100=best). Growth Mixture Models (1-5 latent classes) were evaluated using Akaike and Bayesian Information Criterion, average posterior probabilities (>0.90), and non-overlapping 95% confidence intervals (CI). Logistic regression identified factors associated with low-CRQoL trajectory.
RESULTS: Among 531 parents, 84% were mothers, 58% resided in the Netherlands, the mean age was 41 years, and 55% were employed. Children were 62% female, median age 10 years, and 69% had moderate/high disease activity at baseline. A 2-class model best described parental CRQoL: most maintained consistently high CRQoL, while a smaller group exhibited persistently low and flat CRQoL. Being in the low-CRQoL trajectory was strongly associated with parents’ mental health conditions (OR=9.15;95%CI= 3.73-22.35), combined mental and physical health conditions (OR=12.55;95%CI= 6.10-26.59), and caring for children with moderate/high disease activity (OR=2.05;95%CI=1.09-3.99).
CONCLUSIONS: Parents of children with JIA followed two CRQoL trajectories in the first-year post-diagnosis. Parental health and child disease activity were key factors associated with lower CRQoL. These results represent an important first step toward early identification of at-risk parents, enabling targeted psychosocial support and resource allocation to improve parents’ well-being and mitigate economic and health system burdens.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR10
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal)