What Is the Impact of Caregiving on Quality of Life for Parents of Children with Juvenile Idiopathic Arthritis: The UCAN CAN-DU and CURE International Prospective Study
Bibliographic record
Abstract
Objectives To describe the care-related quality of life of caregivers of children with juvenile idiopathic arthritis (JIA). Methods The Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN-DU) and CURE study captures consecutive caregiver reported data including the standardized instrument CarerQoL questionnaire. The cohort includes all subtypes of JIA, and patients across the disease trajectory from new diagnosis to starting or stopping biologics. The analytic sample included all patients with a completed CarerQOL measure at baseline. Data collected included demographics, and a standardized measure of caregiving impact, the CarerQol instrument, and questions about paid/unpaid caregiving help. The CarerQol has 6 domains (problems with physical health, mental health, daily activities, relational, financial, and caregiving fulfillment and caregiving support) and can be summarized with a utility score from 0-100 with higher numbers indicating higher impact. Descriptive analyses were performed using RStudio. Results Among 498 participants, 282 (56.5%) were from the Netherlands, and 418 (83.9%) were mothers with median age of 42 years [IQR 36.0-46.0]. Most caregivers (n=427, 85.7%) lived with a spouse/partner, and 430 (86.3%) had either university or technical/college education. In terms of employment, 200 (40.8%) worked full-time, and 195 (39.8%) part-time, while 350 (70.4%) of spouses/partners worked full-time. Physical health conditions were reported by 349 (51%) caregivers, and 110 (16%) had mental health conditions. For spouses, 211 (36%) had physical health conditions, and 48 (8%) had mental health conditions. The mean CarerQoL utility score was 81.5 (SD: 11.1), with a median of 84.2 [IQR 77.1-88.2]. In terms of domains, physical health problems were the most common (43.8%), followed by mental health problems (41.8%) and daily activity problems (41.3%). Financial problems (13.2%) and relational problems (16.9%) were less commonly reported. Conversely, 92.4% felt some or a lot of fulfillment, and 80.3% felt they had caregiving support. Other questions examined unpaid and paid help. There, 20.1% of caregivers reported receiving unpaid help from family, friends, or neighbors in the last 3 months (median 15 hours, [IQR 5-26.2]), 3.8% received paid help with childcare (median 16 hours, [IQR 5-38.5), and 17 (3.4%) received paid help with household tasks (median 12 hours, [IQR 4-20]. Conclusion The study highlights the caregiving impact experienced by caregivers of children with JIA. Despite high levels of fulfillment and support, a substantial proportion reported unmet needs. These findings underscore the importance of targeted interventions to support caregivers.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.007 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".