通过对中国基因诊断患者的疾病成本分析,研究神经发育疾病(NDDs)的负担。
我们从2020年9月1日至2021年1月30日招募了具有遗传诊断(GD)的NDD患者(0-18岁)。我们收集了诊断细节的基本信息,以及直接医疗费用,接受GD前后的直接非医疗成本和间接成本。我们通过计算每位患者每天的成本来纠正时间偏差的成本。
对于502名患有NDD的患者,平均年龄为4.08±3.47。家庭收入平均每月0.6(0.4,1.0)10,000元。直接医疗费用,直接非医疗成本和间接成本分别为12.27(7.36,22.23)万元人民币,每位患者1.45(0.73,2.69)10,000元人民币和14.14(4.80,28.25)10,000元人民币,分别。每位患者平均从保险中获得1.20(0.34,3.60)万元人民币(15.91%)。收到GD后的每日总成本比GD前降低约62.48%(191.59元人民币与71.45元人民币)。实验室成本的下降范围(95.77%,P<0.05)最大,其次是毒品(91.39%,P<0.05),住院治疗(90.85%,P<0.05),和咨询(57.41%,P<0.05)。康复费用略有增加,但差异无统计学意义(P>0.05)。诊断年龄小于1岁时,每位患者的每日直接医疗费用从311.79元下降到77.14元,下降了75.26%(P<0.05),诊断年龄为1-3岁和3岁以上分别下降了49.30%(P<0.05)和8.97%(P>0.05)。
早期基因诊断对于减少疾病负担至关重要,因为当他们在年轻时被诊断时,花费的钱较少。NDD患者会招致沉重的经济负担,特别是在康复成本和间接成本方面,因为病人的保险范围很低,因此,政府迫切需要更多地关注这些问题。
To
study the burden of neurodevelopmental diseases (NDDs) via cost-of-illness analysis of Chinese patients with genetic diagnosis.
We recruited NDD patients (0-18 years old) with genetic diagnosis (GD) from September 1, 2020 to January 30, 2021. We gathered basic information on the details of diagnosis, as well as the direct medical cost, direct non-healthcare cost and indirect cost before and after receiving GD. We corrected the cost for time biases by calculating the cost per day for each patient.
For the 502 patients with NDDs, the mean age was 4.08 ± 3.47. The household income was 0.6 (0.4, 1.0) 10,000 CNY per-month on average. The direct medical cost, direct non-healthcare cost and indirect cost were 12.27 (7.36, 22.23) 10,000 CNY, 1.45 (0.73, 2.69)10,000 CNY and 14.14(4.80, 28.25) 10,000 CNY per patient, respectively. Every patient received 1.20 (0.34, 3.60) 10,000 CNY on average (15.91%) from insurance. The daily total cost after receiving GD were ~62.48% lower than those before GD (191.59 CNY vs. 71.45 CNY). The descend range of lab cost (95.77%, P < 0.05) was the largest, followed by drugs (91.39%, P < 0.05), hospitalization (90.85%, P < 0.05), and consultation (57.41%, P < 0.05). The cost of rehabilitation kept slightly increasing but there were no significant differences (P > 0.05). The daily direct medical cost of each patient fell by 75.26% (P < 0.05) from 311.79 CNY to 77.14 CNY when the diagnostic age was younger than 1, and declined by 49.30% (P < 0.05) and 8.97% (P > 0.05) when the diagnostic age was 1-3 and older than 3, respectively.
Early genetic diagnosis is crucial for to reducing the burden of disease because of the amount of money spent was lower when they are diagnosed at younger age. Patients with NDDs can incur a heavy economic burden, especially in rehabilitation cost and indirect cost, because the insurance coverage for patients is low, so it is urgent for governments to pay more attention to these issues.