神经发育性疾病对基因诊断患者的经济负担研究。
Study on the Economic Burden of Neurodevelopmental Diseases on Patients With Genetic Diagnosis.
机构信息
Department of Information Management, Maternal and Child Health Hospital of Hunan Province, Changsha, China.
Department of Pediatrics, Peking University First Hospital, Beijing, China.
出版信息
Front Public Health. 2022 May 9;10:887796. doi: 10.3389/fpubh.2022.887796. eCollection 2022.
OBJECTIVE
To study the burden of neurodevelopmental diseases (NDDs) via cost-of-illness analysis of Chinese patients with genetic diagnosis.
METHODS
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.
RESULTS
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%, < 0.05) was the largest, followed by drugs (91.39%, < 0.05), hospitalization (90.85%, < 0.05), and consultation (57.41%, < 0.05). The cost of rehabilitation kept slightly increasing but there were no significant differences ( > 0.05). The daily direct medical cost of each patient fell by 75.26% ( < 0.05) from 311.79 CNY to 77.14 CNY when the diagnostic age was younger than 1, and declined by 49.30% ( < 0.05) and 8.97% ( > 0.05) when the diagnostic age was 1-3 and older than 3, respectively.
CONCLUSIONS
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.
目的
通过对有遗传诊断的中国神经发育疾病（NDD）患者进行疾病经济负担分析，研究 NDD 的负担。
方法
我们招募了 2020 年 9 月 1 日至 2021 年 1 月 30 日有遗传诊断（GD）的 NDD 患者（0-18 岁）。我们收集了每位患者的诊断详情基本信息、以及 GD 前后的直接医疗成本、直接非医疗成本和间接成本。我们通过计算每位患者的每日成本来纠正时间偏倚造成的成本。
结果
502 例 NDD 患者的平均年龄为 4.08±3.47 岁。家庭月均收入为 0.6（0.4，1.0）万元。每位患者的直接医疗成本、直接非医疗成本和间接成本分别为 12.27（7.36，22.23）万元、1.45（0.73，2.69）万元和 14.14（4.80，28.25）万元。每位患者平均从保险中获得 1.20（0.34，3.60）万元的赔付（15.91%）。GD 后每位患者的每日总成本比 GD 前低约 62.48%（191.59 元比 71.45 元）。实验室成本（95.77%，<0.05）的降幅最大，其次是药物（91.39%，<0.05）、住院（90.85%，<0.05）和咨询（57.41%，<0.05）。康复成本略有增加，但无显著差异（>0.05）。当诊断年龄小于 1 岁时，每位患者的直接医疗日成本从 311.79 元下降 75.26%（<0.05），当诊断年龄为 1-3 岁和大于 3 岁时，分别下降 49.30%（<0.05）和 8.97%（>0.05）。
结论
早期遗传诊断对降低疾病负担至关重要，因为诊断年龄越小，花费的金额越低。NDD 患者可能会承受沉重的经济负担，特别是在康复费用和间接费用方面，因为患者的保险覆盖范围较低，因此政府迫切需要关注这些问题。
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