Healthcare Resource Utilization and Costs in Patients with Alagille Syndrome Using Population-Based Healthcare Data from South Korea
Author(s)
Kim S1, Choi K2, Lee HS3, Suh HS4
1College of Pharmacy, Kyung Hee University, Seoul, South Korea, 2Department of Regulatory Science, Graduate School, Kyunghee University, Seoul, Seoul, Korea, Republic of (South), 3Department of Regulatory Science, Graduate School, Kyung Hee University, Seoul, Korea, Republic of (South), 4Department of Regulatory Science, Graduate School, Kyung Hee University, Institute of Regulatory Innovation through Science, Kyung Hee University, Department of Pharmacy, College of Pharmacy, Kyung Hee University, Seoul, Korea, Republic of (South)
Presentation Documents
OBJECTIVES: Alagille syndrome (ALGS) is a rare genetic disorder characterized by the malfunction of multiple systems, including the liver and heart. It encompasses challenging symptoms that necessitate frequent clinical intervention, leading to a financial burden among pediatric patients. The present study investigated the utilization of healthcare resources and associated costs in patients with ALGS, utilizing population-based healthcare data that encompassed the entirety of ALGS patients in South Korea.
METHODS: A retrospective cohort study was conducted utilizing data from the Health Insurance Review & Assessment Service. We identified patients diagnosed with ALGS (ICD code Q44.7 [other congenital malformations of liver] and registration code V900 [co-payment assistance for extremely rare diseases]) between March 2016 and October 2020, because of the introduction of co-payment assistance for ALGS in March 2016. Among these patients, the index date was defined as the first occurrence of a Q44.7 diagnosis between January 2008 and October 2021. The annual length of inpatient stay, number of outpatient visits, costs of care associated with ALGS per patient were assessed during the first, second, and third year from the index date, respectively.
RESULTS: A total of 63 patients with ALGS were identified, with a mean age of 5.3 ± 6.3 years on the index date. Throughout the first, second, and third year, there was a consistent utilization of healthcare services (length of inpatient stay: 11.0, 4.5, and 4.1 days, respectively; number of outpatient visits: 10.6, 8.0, and 5.7, respectively). The total costs of care were higher for hospitalization when compared to outpatient care (1st year: US$4,632 vs US$656; 2nd year: US$2,982 vs US$525; 3rd year: US$2,350 vs US$382). The copayment rates were higher for outpatient care (15.9–22.2%) compared to hospitalization (3.9–7.6%).
CONCLUSIONS: Pediatric patients with ALGS experience persistent utilization of healthcare services and the accompanying costs, which can impose a significant burden.
Conference/Value in Health Info
Value in Health, Volume 26, Issue 11, S2 (December 2023)
Code
EE244
Topic
Economic Evaluation, Study Approaches
Disease
Diabetes/Endocrine/Metabolic Disorders (including obesity), Pediatrics, Rare & Orphan Diseases