Abstracts Health Sciences

Assessing Health Care Costs, Treatment Patterns, and Health-Related Quality of Life in Children with Juvenile Idiopathic Arthritis and their Caregivers.

by Luiza R. Grazziotin Lago

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.