Im Dong Eun, Kang Hye-Young
Department of Pharmaceutical Medicine and Regulatory Sciences, College of Medicine and College of Pharmacy, Yonsei University, Incheon, South Korea.
College of Pharmacy, Yonsei Institute of Pharmaceutical Sciences, Yonsei University, 85 Songdogwahak-Ro, Yeonsu-Gu, Incheon, 21983, South Korea.
Sci Rep. 2025 Jul 2;15(1):23271. doi: 10.1038/s41598-025-06630-5.
Wilson's disease (WD) is a rare genetic disorder causing copper accumulation in the liver, brain, and other organs, causing severe health complications. While studies have assessed WD's economic impact, research on the financial burden of its complications remains limited. This study examines both the epidemiological characteristics and socioeconomic burden of WD by complication type using an all-cause cost-of-illness approach with 2019 claims data from the National Health Insurance Service of South Korea (NHIS). Among 1462 patients (prevalence: 0.028 per 1,000), complications were present in 68.7%, with hepatic (55.8%) being most common, followed by neurological (16.8%), psychiatric (13.9%), and hematological (6.8%). Disabilities affected 21.5% of patients, with 54.5% classified as severe. Annual hospitalization rates were 6.44% for WD-related and 19.36% for all-cause admissions, with WD-related hospitalizations averaging 4.38 per patient. Medication adherence was low (53.4% mean medication possession ratio). The societal perspective, the all-cause per-capita cost was $6297, totaling $9.21 million nationally. Neurological complications increased costs by 1.84 times, psychiatric by 1.64, and disabilities by 1.66. WD imposes a substantial socioeconomic burden in South Korea, primarily due to neurological and psychiatric complications and high hospitalization rates. Targeted prevention and effective management of these complications are essential to reduce costs and improve outcomes.
威尔逊病（WD）是一种罕见的遗传性疾病，会导致铜在肝脏、大脑和其他器官中蓄积，引发严重的健康并发症。虽然已有研究评估了WD的经济影响，但关于其并发症的财务负担的研究仍然有限。本研究采用全病因疾病成本法，利用韩国国家健康保险服务（NHIS）2019年的理赔数据，按并发症类型考察了WD的流行病学特征和社会经济负担。在1462名患者中（患病率：每1000人中有0.028人），68.7%存在并发症，其中肝脏并发症（55.8%）最为常见，其次是神经并发症（16.8%）、精神并发症（13.9%）和血液学并发症（6.8%）。21.5%的患者有残疾，其中54.5%被归类为重度残疾。WD相关的年住院率为6.44%，全病因住院率为19.36%，每位WD患者的相关住院平均次数为4.38次。药物依从性较低（平均药物持有率为53.4%）。从社会角度来看，人均全病因成本为6297美元，全国总计921万美元。神经并发症使成本增加了1.84倍，精神并发症增加了1.64倍，残疾使成本增加了1.66倍。在韩国，WD带来了巨大的社会经济负担，主要是由于神经和精神并发症以及高住院率。针对性地预防和有效管理这些并发症对于降低成本和改善治疗效果至关重要。
