Abstract：
BACKGROUND: Surgical management of Hirschsprung disease (HD) in low- and middle-income countries is typically a staged procedure, necessitating multiple hospitalizations and clinic visits increasing family financial burden. Currently, there is limited information on the costs borne by caretakers of children with Hirschsprung disease seeking surgical intervention. This study seeks to measure the costs and economic burden of surgical treatment for Hirschsprung disease in western Uganda.
METHODS: A cross-sectional study using cost analysis was conducted among caretakers of patients who completed surgical treatment of HD between January 2017 and December 2021 at two hospitals in western Uganda. The average direct and indirect costs incurred by caretakers presenting at a public and private hospital were computed.
RESULTS: A total of 69 patients (M: F = 7:1) were enrolled in the study. The median age at diagnosis was 60.5 (IQR 3-151.25) days for children and two-staged pull-through procedure was the common surgery performed. The mean overall cost for treatment was US $960 (SD = $720), with the majority of costs coming from direct medical costs. Nearly half (48%) of participants resorted to distress financing to finance their child\'s surgical care. The overwhelming majority of patients (n = 64, 93%) incurred catastrophic expenditure from the total costs of surgery for HD, and 97% of participants fell below the international poverty line at the time treatment was completed.
CONCLUSIONS: Despite the availability of \'free care\' from government hospital and non-profit services, this study found that surgical management of Hirschsprung disease imposed substantial cost burden on families with Hirschsprung disease patients.
METHODS: A cross-sectional study using cost analysis was conducted among caretakers of patients who completed surgical treatment of HD between January 2017 and December 2021 at two hospitals in western Uganda. The average direct and indirect costs incurred by caretakers presenting at a public and private hospital were computed.
RESULTS: A total of 69 patients (M: F = 7:1) were enrolled in the study. The median age at diagnosis was 60.5 (IQR 3-151.25) days for children and two-staged pull-through procedure was the common surgery performed. The mean overall cost for treatment was US $960 (SD = $720), with the majority of costs coming from direct medical costs. Nearly half (48%) of participants resorted to distress financing to finance their child\'s surgical care. The overwhelming majority of patients (n = 64, 93%) incurred catastrophic expenditure from the total costs of surgery for HD, and 97% of participants fell below the international poverty line at the time treatment was completed.
CONCLUSIONS: Despite the availability of \'free care\' from government hospital and non-profit services, this study found that surgical management of Hirschsprung disease imposed substantial cost burden on families with Hirschsprung disease patients.
摘要：
背景：在低收入和中等收入国家，先天性巨结肠（HD）的外科治疗通常是分阶段进行的，需要多次住院和就诊，增加了家庭经济负担。目前,关于寻求手术干预的先天性巨结肠患儿看护者承担的费用的信息有限。这项研究旨在衡量乌干达西部Hirschsprung病手术治疗的成本和经济负担。
方法：对2017年1月至2021年12月在乌干达西部的两家医院完成HD手术治疗的看护者进行了一项使用成本分析的横断面研究。计算了在公立和私立医院就诊的护理人员产生的平均直接和间接成本。
结果：共有69名患者（M:F=7:1）纳入研究。儿童诊断时的中位年龄为60.5（IQR3-151.25）天，并且两阶段拉出手术是常见的手术。治疗的平均总成本为960美元（SD=720美元），大部分费用来自直接医疗费用。近一半(48%)的参与者求助于困境融资来资助他们孩子的手术护理。绝大多数患者（n=64，93％）在HD手术的总费用中产生了灾难性的支出，97%的参与者在治疗完成时低于国际贫困线。
结论：尽管政府医院和非营利服务提供了“免费护理”，这项研究发现,先天性巨结肠的外科治疗给患有先天性巨结肠的患者家庭带来了巨大的费用负担.
方法：对2017年1月至2021年12月在乌干达西部的两家医院完成HD手术治疗的看护者进行了一项使用成本分析的横断面研究。计算了在公立和私立医院就诊的护理人员产生的平均直接和间接成本。
结果：共有69名患者（M:F=7:1）纳入研究。儿童诊断时的中位年龄为60.5（IQR3-151.25）天，并且两阶段拉出手术是常见的手术。治疗的平均总成本为960美元（SD=720美元），大部分费用来自直接医疗费用。近一半(48%)的参与者求助于困境融资来资助他们孩子的手术护理。绝大多数患者（n=64，93％）在HD手术的总费用中产生了灾难性的支出，97%的参与者在治疗完成时低于国际贫困线。
结论：尽管政府医院和非营利服务提供了“免费护理”，这项研究发现,先天性巨结肠的外科治疗给患有先天性巨结肠的患者家庭带来了巨大的费用负担.
