Browsing by Author "Koffijberg, Hendrik"

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    Assessing Health Care Costs, Treatment Patterns, and Health-Related Quality of Life in Children with Juvenile Idiopathic Arthritis and their Caregivers.
    (2022-01-20) Grazziotin Lago, Luiza R.; Marshall, Deborah A.; Twilt, Marinka; Currie, Gillian; Koffijberg, Hendrik
    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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    Factors associated with care- and health-related quality of life of caregivers of children with juvenile idiopathic arthritis
    (2022-07-23) Grazziotin, Luiza R.; Currie, Gillian; Twilt, Marinka; IJzerman, Maarten J.; Kip, Michelle M. A.; Koffijberg, Hendrik; Bonsel, Gouke; Benseler, Susanne M.; Swart, Joost F.; Vastert, Sebastiaan J.; Wulffraat, Nico M.; Yeung, Rae S. M.; Armbrust, Wineke; van den Berg, J. M.; Marshall, Deborah A.
    Abstract Objective This study investigates the relationship of child, caregiver, and caring context measurements with the care-related quality of life (CRQoL) and health-related quality of life (HRQoL) of caregivers of children with juvenile idiopathic arthritis (JIA). Methods We performed a cross-sectional analysis of baseline data on caregivers of children with JIA from Canada and the Netherlands collected for the “Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases” study from June 2019 to September 2021. We used the CRQoL questionnaire (CarerQoL), adult EQ-5D-5L, and proxy-reported Youth 5-Level version of EuroQoL (EQ-5D-5L-Y) to assess caregiver CRQoL, caregiver HRQoL, and child HRQoL, respectively. We used a multivariate analysis to assess the relationship between both caregiver CRQoL and HRQoL and patient, caregiver, and caring context measurements. Results A total of 250 caregivers were included in this study. Most of the caregivers were from the Netherlands (n = 178, 71%) and 77% were females (n = 193). The mean CarerQoL scores was 82.7 (standard deviation (SD) 11.4) and the mean EQ-5D-5L utility score was 0.87 (SD 0.16). Child HRQoL and employment had a positive relationship with both caregiver CarerQoL and EQ-5D-5L utility scores (p < 0.05), while receiving paid or unpaid help had a negative relationship with both scores (p < 0.05). Conclusion Our findings indicated that to understand the impact of JIA on families, we need to consider socio-economic factors, such as employment and support to carry caregiving tasks, in addition to child HRQoL.
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    Real-world data reveals the complexity of disease modifying anti-rheumatic drug treatment patterns in juvenile idiopathic arthritis: an observational study
    (2022-04-11) Grazziotin, Luiza R.; Currie, Gillian; Twilt, Marinka; Ijzerman, Maarten J.; Kip, Michelle M. A.; Koffijberg, Hendrik; Benseler, Susanne M.; Swart, Joost F.; Vastert, Sebastiaan J.; Wulffraat, Nico M.; Yeung, Rae S. M.; Marshall, Deborah A.
    Abstract Objective Pharmacological treatment is a cornerstone of care for children with juvenile idiopathic arthritis (JIA). The objective of this study is to evaluate prescription patterns of conventional and biologic disease modifying anti-rheumatic drugs (c-DMARDs and b-DMARDs) for patients with JIA. Methods We conducted a retrospective cohort study of children diagnosed with JIA at a rheumatology pediatric clinic. Eligibility criteria were defined as children and youth newly diagnosed with enthesis-related arthritis, polyarticular, or oligoarticular JIA between 2011 and 2019, with at least one year of observation. Data on c-DMARDs and b-DMARDs prescriptions were obtained from electronic medical charts. We used descriptive statistics, Kaplan–Meier survival methods, and Sankey diagrams to describe treatment prescription patterns. Results A total of 325 patients with JIA were included, with a median observation time of 3.7 years. The most frequently prescribed c-DMARD and b-DMARD were methotrexate and etanercept, respectively. Within the first year of rheumatology care, 62% and 21% of patients had a c-DMARD and a b-DMARD prescribed, respectively. These proportions varied greatly by JIA subtype. Among the 147 (147/325, 45%) patients that had at least one b-DMARD prescribed, 24% were prescribed a second, and 7% a third-line of b-DMARD. A total of 112 unique treatment sequences were observed, with c-DMARD monotherapy followed by the addition of either a b-DMARD (56%) or another c-DMARD (30%) being the two most prevalent patterns in this cohort. Conclusion We observed a variety of treatment trajectories, with many patients experiencing multiple treatment lines, illustrating the complexity of the overall JIA treatment path.