目的: 研究克罗恩病患者的疾病经济负担及其相关因素,为降低个人负担、完善医保报销政策提供意见参考。方法: 采用横断面调查的研究方法,根据卫生服务研究基本原理和原则自行制作问卷,对上海市志愿者服务基金会平台所服务的克罗恩病患者进行调查。搜集患者基本特征、接受治疗的方案、过去一年发生的治疗费用等信息,运用描述性统计分析克罗恩病患者过去一年治疗疾病的住院、门诊费用构成,在此基础上进一步构建对数-线性模型,分析克罗恩病患者经济负担的相关因素。结果: 研究发放820份问卷,回收799份问卷,其中有效问卷797份。男性528例(66.25%),女性269例(33.75%),患者平均年龄(34.02±11.49)岁,年龄集中在18~39岁(510例,63.99%),平均患病年限(5.58±5.13)年。有10.7%的患者并未接受持续治疗,持续治疗的患者平均每年治疗费用54 246元,其中个人支付30 279元(55.8%),统筹支付23 966元(44.2%),个人经济负担接近2020年全国居民人均可支配收入32 189元(94.1%),超过2016年我国2型糖尿病患者每年治疗费用8 245元。门诊与住院分布上,住院每年平均费用31 092元,其中个人自付费用14 673元(48.5%),统筹支付费用16 418元(51.5%);门诊每年平均费用23 154元,个人自付15 606元(65.1%),统筹支付费用7 548元(34.9%),门诊自付费用高于住院自付费用。对数-线性模型回归结果表明,每年治疗总费用与患病年限(β=0.03,P<0.01)、患并发症(β=-0.68,P<0.01)、接受手术治疗(β=0.52,P<0.01)、使用免疫抑制剂(β=0.51,P<0.01)、年门诊就诊次数(β=0.02,P<0.05)、年住院次数(β=0.08,P<0.01)有关。结论: 克罗恩病患者每年疾病经济负担较重,且随着患病年限的增长而明显升高,超过了糖尿病等慢性疾病。患者个人经济负担接近全国居民人均可支配收入,医疗保障部门应该制定相关政策,降低患者经济负担,针对患者门诊个人经济负担超过住院个人经济负担的特点,将克罗恩病纳入门诊特殊病种是未来可以考虑的措施。

Objective: To study the economic burden of Crohn’s disease and its related factors, and to provide opinions for reducing personal burden and improving reimbursement policy. Methods: Using a cross-sectional method, a self-created questionnaire based on the basic principles of health services research was used to survey Crohn’s disease patients served by the Shanghai volunteer service foundation platform. Information collected included basic characteristics, therapy, and medical costs related to Crohn’s disease in the past 12 months. Descriptive statistics were used to analyse the composition of inpatient and outpatient costs of Crohn’s disease for treatment of the disease in the past year. Further, a logarithm-linear model was constructed to analyse the factors associated with the financial burden of Crohn’s disease. Results: In the study, 820 questionnaires were distributed and 799 questionnaires were returned, of which 797 were valid. There were 528 (66.25%) males and 269 (33.75%) females. The mean age of the patients was (34.02±11.49) years, with a concentration between 18-39 years (510 cases, 63.99%) and a mean disease duration of (5.58±5.13) years. 10.7% of the patients did not receive continuous treatment, and the average annual treatment cost for the patients with continuous treatment was 54 246 Yuan, of which 30 279 Yuan (55.8%) was paid by the individuals and 23 966 Yuan (44.2%) was paid by the insurance. The personal financial burden was close to the national per capita disposable income in 2020, which was 32 189 Yuan (94.1%), exceeding the annual cost for type 2 diabetes in China in 2016, 8 245 Yuan. In terms of the distribution of outpatient and inpatient services, the average annual cost of inpatient services was 31 092 Yuan, of which 14 673 Yuan (48.5%) was paid out of pocket by the individuals and 16 418 Yuan (51.5%) was paid by the insurance; the average annual cost of outpatient services was 23 154 Yuan, of which 15 606 Yuan (65.1%) was paid out of po-cket by the individuals and 7 548 Yuan (34.9%) was paid by the insurance. The personal burden of outpatient care was higher than of inpatient care. The regression results of the logarithm-linear model showed that the total annual treatment cost was related to the duration of illness (β=0.03, P<0.01), having complications (β=-0.68, P<0.01), receiving surgical treatment (β=0.52, P<0.01), using immunosuppressive drugs (β=0.51, P<0.01), annual outpatient visits (β=0.02, P<0.05), and number of hospitalizations per year (β=0.08, P<0.01). Conclusion: The annual financial burden for patients with Crohn’s disease is heavy and rises significantly with the duration of illness, exceeding that of chronic diseases such as diabetes. The personal financial burden is close to the national per capita disposable income, and the medical security department should develop policies to reduce the financial burden. The inclusion of Crohn’s disease as a special outpatient disease is a possible measure that could be considered in response to the fact that the outpatient personal financial burden is heavier than the inpatient’s.