Idiopathic arthritis

Keywords

1. Juvenile Idiopathic Arthritis
2. Healthcare Costs JIA
3. Economic Burden JIA
4. Standardization Resource Use JIA
5. Healthcare Resource Utilization JIA

Juvenile idiopathic arthritis (JIA), a term encompassing a group of arthritic conditions affecting children, emerges not only as a challenge to the well-being of young patients but also as a significant economic strain on healthcare systems and families. A study titled “Seeking the state of the art in standardized measurement of health care resource use and costs in juvenile idiopathic arthritis: a scoping review,” published in the Pediatric Rheumatology Online Journal, delves into this pressing issue. The study, by Kip et al. (2019), lays bare the pressing need for standardization in measuring healthcare resource utilization and costs in JIA to better grasp and manage the economic burden it poses.

DOI: https://doi.org/10.1186/s12969-019-0321-x

Introduction

The study recognizes that while JIA is widely researched, vast differences remain in how related costs are reported, leading to discrepancies in the understanding of the condition’s economic impact. This scoping review of existing literature aims to synthesize the current practices in capturing and computing healthcare resource use and unit costs in JIA’s economic evaluations or costing studies.

Methodology

PubMed and Embase databases served as the source for the scoping review, conducted in July 2018, focusing on English language peer-reviewed articles that reported primary research in economic evaluations, costing studies, or resource utilization studies on JIA patients. A total of 1176 unique citations were identified, culminating in 20 relevant full-text articles for analysis, consisting of four full economic evaluations, five cost-outcome descriptions, eight cost descriptions, and three resource use reports.

Findings

The articles included in this scoping review frequently reported healthcare resource use items like medication (80%), outpatient and inpatient hospital visits (80%), laboratory tests (70%), medical professional visits (70%), and other medical visits (65%). Interestingly, productivity losses of caregivers (55%) were more often considered than (future) productivity losses of patients (15%), pointing to an imbalanced consciousness towards the indirect costs borne by families. The inclusion of family-incurred costs, such as school expenses and transportation, was even rarer.

Moreover, the primary means of obtaining resource use data was through family self-reported questionnaires, whereas estimates of unit costs were largely sourced from reimbursement claims, administrative data, or literature-based estimates. The authors noted a pattern of heterogeneity in reporting productivity losses, missed school days, and family-borne costs in the studies. This variability impedes the consistent and comparative analysis of the economic implications associated with JIA.

Implications

The review underscores a stark reality: the full economic impact of JIA is not accurately captured, largely due to the lack of standardized reporting of resource use items and unit costs. This inconsistency hampers a comprehensive understanding of the disease’s burden and its variation across different health systems. The authors suggest that the establishment of standardized measures would offer better guidance for future research and enhance the quality and comparability of economic evaluations or costing studies in JIA and potentially other childhood diseases.

The Burden of Juvenile Idiopathic Arthritis

Understanding the gravity of JIA’s impact requires unpacking both the direct and indirect costs associated with its management. JIA, comprising various forms such as systemic JIA, oligoarticular JIA, and polyarticular JIA, can lead to chronic pain, disability, and long-term complications that can stretch health resources. It necessitates the use of costly medications, including biologics, along with regular medical consultations, hospital admissions, and laboratory work-ups.

Aside from direct healthcare costs, there are substantial indirect costs such as parents’ loss of productivity due to caregiving demands or patients’ loss of future earnings owing to disease-related disability. Furthermore, the disease can disrupt a child’s education, adding another layer of long-term economic implications.

The Need for Standardization

The absence of standard measurements for resource use and cost determination in JIA poses formidable challenges, emphasizing why the findings by Kip et al. (2019) are crucial. There exists a necessity for a streamlined approach that considers a wide spectrum of costs: not only those incurred directly by healthcare systems but also the out-of-pocket expenses borne by families and the opportunity costs of lost education and employment.

To approximatively quantify the burden of JIA, robust methods for economic evaluations must be adopted. Bodies such as the Canadian Institutes of Health Research (CIHR) and the Canadian Agency for Drugs and Technologies in Health (CADTH) have put forth guidelines for economic evaluations of health technologies but a specific consensus on JIA-related resource use is required. Foundational to this are enhanced methodologies like standard cost questionnaires and databases like the Database of Instruments for Resource Use Measurement (DIRUM), which offer potential starting points for harmonization efforts.

In conclusion, the recent study by Kip et al. (2019) offers imperative insights into the complexities of JIA’s economic impact. They advocate for the standardization of the economic assessment of JIA, a step that could cast a clearer light on the financial demands imposed by the illness. The practical consequence would be a more informed allocation of healthcare funds and potentially improved outcomes for patients afflicted with this chronic childhood disease.

Future Research and Policy Implications

Moving forward, research initiatives must converge on evolving a standardized toolkit for economic evaluations of JIA. This will require collaborative efforts involving rheumatologists, health economists, patient advocacy groups, and policymakers. A consensus on the most critical resource use items to include in studies should come to fruition, learned from the pooled experience and data of various health systems.

Through standardization, subsequent studies may enable comparability across jurisdictions and time periods, bolstering the capacity for health care systems to respond to JIA with effective, cost-conscious strategies. Recognition of the indirect costs to families and society could see the development of complementary policies that support not only the medical treatment of JIA but also its broader socioeconomic ramifications.

References

1. Bonsel, G. G., Feldman, B. M., Hoppenreijs, E., Lang, B., LeBlanc, C., Sepulveda, A., Toupin-April, K., van Pelt, P., van Royen-Kerkhof, A. (2019). Seeking the state of the art in standardized measurement of health care resource use and costs in juvenile idiopathic arthritis: A scoping review. Pediatric Rheumatology Online Journal, 17(1), https://doi.org/10.1186/s12969-019-0321-x
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