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

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dc.contributor.advisorMarshall, Deborah A.
dc.contributor.authorGrazziotin Lago, Luiza R.
dc.contributor.committeememberTwilt, Marinka
dc.contributor.committeememberCurrie, Gillian
dc.contributor.committeememberKoffijberg, Hendrik
dc.dateSpring Convocation
dc.date.accessioned2023-02-11T00:31:41Z
dc.date.embargolift2023-02-22
dc.date.issued2022-01-20
dc.description.abstractJuvenile 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.
dc.identifier.citationGrazziotin Lago, L. R. (2022). Assessing Health Care Costs, Treatment Patterns, and Health-Related Quality of Life in Children with Juvenile Idiopathic Arthritis and their Caregivers. (Doctoral thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.
dc.identifier.urihttp://hdl.handle.net/1880/115845
dc.identifier.urihttps://dx.doi.org/10.11575/PRISM/40739
dc.language.isoenen
dc.language.isoEnglish
dc.publisher.facultyGraduate Studiesen
dc.publisher.facultyCumming School of Medicine
dc.publisher.institutionUniversity of Calgaryen
dc.rightsUniversity of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission.en
dc.subjectjuvenile idiopathic arthritis
dc.subjectcosts
dc.subjecttreatment patterns
dc.subjecthealth-related quality of life
dc.subjecthealth utility scores
dc.subjectcare-related quality of life
dc.subject.classificationHealth Sciences--General
dc.titleAssessing Health Care Costs, Treatment Patterns, and Health-Related Quality of Life in Children with Juvenile Idiopathic Arthritis and their Caregivers.
dc.typedoctoral thesis
thesis.degree.disciplineMedicine – Community Health Sciences
thesis.degree.grantorUniversity of Calgaryen
thesis.degree.grantorUniversity of Calgary
thesis.degree.nameDoctor of Philosophy (PhD)
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