中国社会医疗保险报销政策的最新变化影响了苯丙酮尿症(PKU)患者特殊食品的经济负担。然而,这一政策变化是否与他们的血液苯丙氨酸(PHE)浓度相关尚不清楚.
■研究PKU患者的报销政策与血液PHE浓度之间的关系。
这项队列研究测量了2018年1月至2021年12月中国4个新生儿筛查中心167名PKU患者的血液PHE浓度。2019年取消了2个中心PKU患者特殊食品的报销政策,并从2020年起恢复。相比之下,其他两个中心一致执行该政策。对2023年9月10日至12月6日的数据进行了分析。
■实施和取消PKU患者特殊食品的报销政策。
■从2018年到2021年定期测量血液PHE浓度。使用单侧Z检验来比较不同年份之间的血液PHE浓度的平均值。
■在167例PKU患者中(平均[SD]年龄,84.4[48.3]个月;87名男性[52.1%]),从2018年至2021年,共收集了4285次血液PHE浓度测量值.对于2019年取消报销政策的中心患者,2019年血液PHE浓度的平均值(SD)为5.95(5.73)mg/dL,显著高于2018年的4.84(4.11)mg/dL(P<0.001),2020年为5.06(5.21)mg/dL(P=0.006),2021年为4.77(4.04)mg/dL(P<.001)。同样,对于2019年取消政策的其他中心的患者,2019年血液PHE浓度的平均值(SD)为5.95(3.43)mg/dL,2018年显著高于5.34(3.45)mg/dL(P=0.03),2020年5.13(3.15)mg/dL(P=0.003),2021年为5.39(3.46)mg/dL(P=0.03)。相反,在一贯实施该政策的2个中心的患者中,任何年份之间均未观察到显著差异.
■在这项来自多个中心的PKU患者的队列研究中,特殊食品报销政策的实施与控制血液PHE浓度相关.PKU患者特殊食品支出应纳入长期社会医疗保险报销范围。
UNASSIGNED: Recent changes in
China\'s social medical insurance reimbursement policy have impacted the financial burden of patients with phenylketonuria (PKU) for special foods. However, whether this policy change is associated with their blood
phenylalanine (PHE) concentration is unclear.
UNASSIGNED: To investigate the association between the reimbursement policy and blood PHE concentration in patients with PKU.
UNASSIGNED: This cohort study measured the blood PHE concentrations of 167 patients with PKU across 4 newborn screening centers in
China from January 2018 to December 2021. The reimbursement policy for special foods for patients with PKU at 2 centers was canceled in 2019 and restored from 2020 onwards. In contrast, the other 2 centers consistently implemented the policy. Data were analyzed from September 10 to December 6, 2023.
UNASSIGNED: The implementation and cancelation of the reimbursement policy for special foods of patients with PKU.
UNASSIGNED: The blood PHE concentration was regularly measured from 2018 to 2021. A 1-sided Z test was used to compare the mean of the blood PHE concentration between different years.
UNASSIGNED: Among 167 patients with PKU (mean [SD] age, 84.4 [48.3] months; 87 males [52.1%]), a total of 4285 measurements of their blood PHE concentration were collected from 2018 to 2021. For patients at the center that canceled the reimbursement policy in 2019, the mean (SD) of the blood PHE concentrations in 2019 was 5.95 (5.73) mg/dL, significantly higher than 4.84 (4.11) mg/dL in 2018 (P < .001), 5.06 (5.21) mg/dL in 2020 (P = .006), and 4.77 (4.04) mg/dL in 2021 (P < .001). Similarly, for patients at the other center that canceled the policy in 2019, the mean (SD) of the blood PHE concentrations in 2019 was 5.95 (3.43) mg/dL, significantly higher than 5.34 (3.45) mg/dL in 2018 (P = .03), 5.13 (3.15) mg/dL in 2020 (P = .003), and 5.39 (3.46) mg/dL in 2021 (P = .03). On the contrary, no significant difference was observed between any of the years for patients at the 2 centers that consistently implemented the policy.
UNASSIGNED: In this cohort study of patients with PKU from multiple centers, the implementation of the reimbursement policy for special foods was associated with controlling the blood PHE concentration. Special foods expenditure for patients with PKU should be included in the scope of long-term social medical insurance reimbursement.