Assessing Health Care Costs, Treatment Patterns, and Health-Related Quality of Life in Children with Juvenile Idiopathic Arthritis and their Caregivers.
Bibliographic record
Abstract
Juvenile idiopathic arthritis (JIA) is an umbrella term that encompasses all forms of arthritis with onset before the age of 16 years and symptoms that persist for more than 6 weeks for which the cause is unknown. JIA can significantly affect the quality of life of children and their families, and the disease and its treatment can increase the economic burden for the health care system and families.This PhD thesis was focused on a research program that addressed four gaps in the literature: 1) assessment of the overall and JIA-related health care resource utilization and associated costs before and after rheumatology care; 2) evaluation of JIA treatment prescription patterns; 3) studies measuring health state utility scores of patients with JIA across their lifespan, including children, adults, and adolescents; and 4) measurement of caregiver health-related quality of life (HRQoL) and care-related quality of life (CRQoL) and investigation of the relationship of those measures with child HRQoL and other influencing factors.We conducted four studies to address those gaps. Two retrospective cohort studies using electronic medical records and administrative databases to assess health care resource use and costs, and sequences of treatment prescriptions in children with JIA in Canada, respectively. Our findings reveal that the care pathway for children with JIA including health care resource utilization, costs, and treatment prescription patterns can be expensive, and complex – and varies by JIA subtype. We then performed a systematic review, which was the first review seeking to identify and assess health utility scores in children, adolescents, and adults with history of JIA. Finally, our last study was the first to assess care-related quality of life in caregivers of children with JIA, and to evaluate factors associated with caregiver care- and health-related quality of life, which highlighted the need for an encompassing family-centred approach of care that goes beyond achieving inactive disease.
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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 | 0.008 | 0.029 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.002 | 0.004 |
| Bibliometrics | 0.009 | 0.011 |
| Science and technology studies | 0.000 | 0.000 |
| 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".