Insurance Reimbursement for Special Foods and Phenylalanine Levels in Patients With PKU in China

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. To investigate th...

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Veröffentlicht in:JAMA network open 2024-06, Vol.7 (6), p.e2412886
Hauptverfasser: Wang, Bo, Xia, Yanzhi, Cheng, Mingyue, Luo, Huili, Xue, Luxi, Gong, Anyue, Liu, Xu, Liao, Gaoqi, Song, Jieping, Ning, Kang
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container_title JAMA network open
container_volume 7
creator Wang, Bo
Xia, Yanzhi
Cheng, Mingyue
Luo, Huili
Xue, Luxi
Gong, Anyue
Liu, Xu
Liao, Gaoqi
Song, Jieping
Ning, Kang
description 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. To investigate the association between the reimbursement policy and blood PHE concentration in patients with PKU. 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. The implementation and cancelation of the reimbursement policy for special foods of patients with PKU. 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. 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 
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However, whether this policy change is associated with their blood phenylalanine (PHE) concentration is unclear. To investigate the association between the reimbursement policy and blood PHE concentration in patients with PKU. 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. The implementation and cancelation of the reimbursement policy for special foods of patients with PKU. 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. 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 &lt; .001), 5.06 (5.21) mg/dL in 2020 (P = .006), and 4.77 (4.04) mg/dL in 2021 (P &lt; .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. 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.</description><identifier>ISSN: 2574-3805</identifier><identifier>EISSN: 2574-3805</identifier><identifier>DOI: 10.1001/jamanetworkopen.2024.12886</identifier><identifier>PMID: 38837161</identifier><language>eng</language><publisher>United States: American Medical Association</publisher><subject>Child ; Child, Preschool ; China ; Cohort Studies ; Female ; Foods, Specialized - economics ; Health Policy ; Humans ; Infant ; Infant, Newborn ; Insurance, Health, Reimbursement - statistics &amp; numerical data ; Male ; Neonatal Screening - economics ; Neonatal Screening - methods ; Online Only ; Original Investigation ; Phenylalanine - blood ; Phenylketonurias - blood ; Phenylketonurias - diet therapy ; Phenylketonurias - economics</subject><ispartof>JAMA network open, 2024-06, Vol.7 (6), p.e2412886</ispartof><rights>Copyright 2024 Wang B et al. .</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,315,782,786,866,887,27931,27932</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/38837161$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Wang, Bo</creatorcontrib><creatorcontrib>Xia, Yanzhi</creatorcontrib><creatorcontrib>Cheng, Mingyue</creatorcontrib><creatorcontrib>Luo, Huili</creatorcontrib><creatorcontrib>Xue, Luxi</creatorcontrib><creatorcontrib>Gong, Anyue</creatorcontrib><creatorcontrib>Liu, Xu</creatorcontrib><creatorcontrib>Liao, Gaoqi</creatorcontrib><creatorcontrib>Song, Jieping</creatorcontrib><creatorcontrib>Ning, Kang</creatorcontrib><title>Insurance Reimbursement for Special Foods and Phenylalanine Levels in Patients With PKU in China</title><title>JAMA network open</title><addtitle>JAMA Netw Open</addtitle><description>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. To investigate the association between the reimbursement policy and blood PHE concentration in patients with PKU. 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. The implementation and cancelation of the reimbursement policy for special foods of patients with PKU. 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. 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 &lt; .001), 5.06 (5.21) mg/dL in 2020 (P = .006), and 4.77 (4.04) mg/dL in 2021 (P &lt; .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. 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.</description><subject>Child</subject><subject>Child, Preschool</subject><subject>China</subject><subject>Cohort Studies</subject><subject>Female</subject><subject>Foods, Specialized - economics</subject><subject>Health Policy</subject><subject>Humans</subject><subject>Infant</subject><subject>Infant, Newborn</subject><subject>Insurance, Health, Reimbursement - statistics &amp; numerical data</subject><subject>Male</subject><subject>Neonatal Screening - economics</subject><subject>Neonatal Screening - methods</subject><subject>Online Only</subject><subject>Original Investigation</subject><subject>Phenylalanine - blood</subject><subject>Phenylketonurias - blood</subject><subject>Phenylketonurias - diet therapy</subject><subject>Phenylketonurias - economics</subject><issn>2574-3805</issn><issn>2574-3805</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpVUE1PwzAMjRAIEPAXUMSJy0acpGl6QmhigJjExIc4Fq91WaBNRtOC-PcU8SHwxdZ79nu2GTsAMQYh4OgJG_TUvYX2OazIj6WQegzSWrPGtmWS6pGyIln_U2-xvRifhBBSgMpMssm2lLUqBQPb7OHCx75FXxC_Jtcs-jZSQ77jVWj5zYoKhzWfhlBGjr7k8yX59xpr9M4Tn9Er1ZE7z-fYuWEq8nvXLfn88u4TnCydx122UWEdae8777C76ent5Hw0uzq7mJzMRiiN7UZVRhqrhRQVQAlpNgQaQ7AoE1sUWlmTpaWgSkKqM7QWPgELWui01AmUaocdf-mu-kVDZTFs02Kdr1rXYPueB3T5f8a7Zf4YXnMASDQkalA4_FZow0tPscsbFwuqh2Mp9DFXwuhMCmXSoXX_r9mvy89f1Qcys4BA</recordid><startdate>20240603</startdate><enddate>20240603</enddate><creator>Wang, Bo</creator><creator>Xia, Yanzhi</creator><creator>Cheng, Mingyue</creator><creator>Luo, Huili</creator><creator>Xue, Luxi</creator><creator>Gong, Anyue</creator><creator>Liu, Xu</creator><creator>Liao, Gaoqi</creator><creator>Song, Jieping</creator><creator>Ning, Kang</creator><general>American Medical Association</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20240603</creationdate><title>Insurance Reimbursement for Special Foods and Phenylalanine Levels in Patients With PKU in China</title><author>Wang, Bo ; Xia, Yanzhi ; Cheng, Mingyue ; Luo, Huili ; Xue, Luxi ; Gong, Anyue ; Liu, Xu ; Liao, Gaoqi ; Song, Jieping ; Ning, Kang</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-a268t-f9e4afb20f11d179999a66e1bd58cc438697d0ef21749a8818697814047d451d3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Child</topic><topic>Child, Preschool</topic><topic>China</topic><topic>Cohort Studies</topic><topic>Female</topic><topic>Foods, Specialized - economics</topic><topic>Health Policy</topic><topic>Humans</topic><topic>Infant</topic><topic>Infant, Newborn</topic><topic>Insurance, Health, Reimbursement - statistics &amp; numerical data</topic><topic>Male</topic><topic>Neonatal Screening - economics</topic><topic>Neonatal Screening - methods</topic><topic>Online Only</topic><topic>Original Investigation</topic><topic>Phenylalanine - blood</topic><topic>Phenylketonurias - blood</topic><topic>Phenylketonurias - diet therapy</topic><topic>Phenylketonurias - economics</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Wang, Bo</creatorcontrib><creatorcontrib>Xia, Yanzhi</creatorcontrib><creatorcontrib>Cheng, Mingyue</creatorcontrib><creatorcontrib>Luo, Huili</creatorcontrib><creatorcontrib>Xue, Luxi</creatorcontrib><creatorcontrib>Gong, Anyue</creatorcontrib><creatorcontrib>Liu, Xu</creatorcontrib><creatorcontrib>Liao, Gaoqi</creatorcontrib><creatorcontrib>Song, Jieping</creatorcontrib><creatorcontrib>Ning, Kang</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>JAMA network open</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Wang, Bo</au><au>Xia, Yanzhi</au><au>Cheng, Mingyue</au><au>Luo, Huili</au><au>Xue, Luxi</au><au>Gong, Anyue</au><au>Liu, Xu</au><au>Liao, Gaoqi</au><au>Song, Jieping</au><au>Ning, Kang</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Insurance Reimbursement for Special Foods and Phenylalanine Levels in Patients With PKU in China</atitle><jtitle>JAMA network open</jtitle><addtitle>JAMA Netw Open</addtitle><date>2024-06-03</date><risdate>2024</risdate><volume>7</volume><issue>6</issue><spage>e2412886</spage><pages>e2412886-</pages><issn>2574-3805</issn><eissn>2574-3805</eissn><abstract>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. To investigate the association between the reimbursement policy and blood PHE concentration in patients with PKU. 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. The implementation and cancelation of the reimbursement policy for special foods of patients with PKU. 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. 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 &lt; .001), 5.06 (5.21) mg/dL in 2020 (P = .006), and 4.77 (4.04) mg/dL in 2021 (P &lt; .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. 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.</abstract><cop>United States</cop><pub>American Medical Association</pub><pmid>38837161</pmid><doi>10.1001/jamanetworkopen.2024.12886</doi><oa>free_for_read</oa></addata></record>
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subjects Child
Child, Preschool
China
Cohort Studies
Female
Foods, Specialized - economics
Health Policy
Humans
Infant
Infant, Newborn
Insurance, Health, Reimbursement - statistics & numerical data
Male
Neonatal Screening - economics
Neonatal Screening - methods
Online Only
Original Investigation
Phenylalanine - blood
Phenylketonurias - blood
Phenylketonurias - diet therapy
Phenylketonurias - economics
title Insurance Reimbursement for Special Foods and Phenylalanine Levels in Patients With PKU in China
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