Medical aid program for chronic pediatric diseases of specified categories in Japan: Current status and future prospects
Background: In 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest...
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| Published in | Pediatrics international Vol. 50; no. 3; pp. 376 - 387 |
|---|---|
| Main Authors | , , , , |
| Format | Journal Article |
| Language | English |
| Published |
Melbourne, Australia
Blackwell Publishing Asia
01.06.2008
Blackwell Publishing Ltd |
| Subjects | |
| Online Access | Get full text |
| ISSN | 1328-8067 1442-200X 1442-200X |
| DOI | 10.1111/j.1442-200X.2008.02595.x |
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| Abstract | Background: In 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest registration data and discuss the future prospects of MAPChD. The differences in MAPChD content before and after legislation were compared.
Methods: The subjects were MAPChD‐registered patients whose guardians had signed a consent document for the children to join a MAPChD research program during the fiscal years 2002–2003. The nationwide electronic registration data were gathered and analyzed, and the official documents about MAPChD were reviewed and summarized.
Results: Given that the overall population was aged 0–19 years, there were four MAPChD beneficiaries for every 1000 children in Japan. Moreover, the prolonged survival of MAPChD patients was accompanied by an increasing prevalence of complications. The percentages of MAPChD beneficiaries who did not sign a consent document for research were 3.1% and 6.3% in 2002 and 2003, respectively. Following the legislation, both inpatients and outpatients younger than 20 years with any of 514 chronic diseases became eligible, and MAPChD began providing welfare services to these patients.
Conclusions: The establishment of a MAPChD database is necessary for further research. It is expected that, in future, more beneficiaries of MAPChD will join the research program. One of the major challenges faced by long‐term survivors of childhood MAPChD diseases is making the transition from a specialized pediatric care facility to an adult health care system. |
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| AbstractList | Background:
In 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest registration data and discuss the future prospects of MAPChD. The differences in MAPChD content before and after legislation were compared.
Methods:
The subjects were MAPChD‐registered patients whose guardians had signed a consent document for the children to join a MAPChD research program during the fiscal years 2002–2003. The nationwide electronic registration data were gathered and analyzed, and the official documents about MAPChD were reviewed and summarized.
Results:
Given that the overall population was aged 0–19 years, there were four MAPChD beneficiaries for every 1000 children in Japan. Moreover, the prolonged survival of MAPChD patients was accompanied by an increasing prevalence of complications. The percentages of MAPChD beneficiaries who did not sign a consent document for research were 3.1% and 6.3% in 2002 and 2003, respectively. Following the legislation, both inpatients and outpatients younger than 20 years with any of 514 chronic diseases became eligible, and MAPChD began providing welfare services to these patients.
Conclusions:
The establishment of a MAPChD database is necessary for further research. It is expected that, in future, more beneficiaries of MAPChD will join the research program. One of the major challenges faced by long‐term survivors of childhood MAPChD diseases is making the transition from a specialized pediatric care facility to an adult health care system. Background: In 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest registration data and discuss the future prospects of MAPChD. The differences in MAPChD content before and after legislation were compared. Methods: The subjects were MAPChD‐registered patients whose guardians had signed a consent document for the children to join a MAPChD research program during the fiscal years 2002–2003. The nationwide electronic registration data were gathered and analyzed, and the official documents about MAPChD were reviewed and summarized. Results: Given that the overall population was aged 0–19 years, there were four MAPChD beneficiaries for every 1000 children in Japan. Moreover, the prolonged survival of MAPChD patients was accompanied by an increasing prevalence of complications. The percentages of MAPChD beneficiaries who did not sign a consent document for research were 3.1% and 6.3% in 2002 and 2003, respectively. Following the legislation, both inpatients and outpatients younger than 20 years with any of 514 chronic diseases became eligible, and MAPChD began providing welfare services to these patients. Conclusions: The establishment of a MAPChD database is necessary for further research. It is expected that, in future, more beneficiaries of MAPChD will join the research program. One of the major challenges faced by long‐term survivors of childhood MAPChD diseases is making the transition from a specialized pediatric care facility to an adult health care system. Background: In 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest registration data and discuss the future prospects of MAPChD. The differences in MAPChD content before and after legislation were compared. Methods: The subjects were MAPChD-registered patients whose guardians had signed a consent document for the children to join a MAPChD research program during the fiscal years 2002-2003. The nationwide electronic registration data were gathered and analyzed, and the official documents about MAPChD were reviewed and summarized. Results: Given that the overall population was aged 0-19 years, there were four MAPChD beneficiaries for every 1000 children in Japan. Moreover, the prolonged survival of MAPChD patients was accompanied by an increasing prevalence of complications. The percentages of MAPChD beneficiaries who did not sign a consent document for research were 3.1% and 6.3% in 2002 and 2003, respectively. Following the legislation, both inpatients and outpatients younger than 20 years with any of 514 chronic diseases became eligible, and MAPChD began providing welfare services to these patients. Conclusions: The establishment of a MAPChD database is necessary for further research. It is expected that, in future, more beneficiaries of MAPChD will join the research program. One of the major challenges faced by long-term survivors of childhood MAPChD diseases is making the transition from a specialized pediatric care facility to an adult health care system. [PUBLICATION ABSTRACT] In 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest registration data and discuss the future prospects of MAPChD. The differences in MAPChD content before and after legislation were compared. The subjects were MAPChD-registered patients whose guardians had signed a consent document for the children to join a MAPChD research program during the fiscal years 2002-2003. The nationwide electronic registration data were gathered and analyzed, and the official documents about MAPChD were reviewed and summarized. Given that the overall population was aged 0-19 years, there were four MAPChD beneficiaries for every 1000 children in Japan. Moreover, the prolonged survival of MAPChD patients was accompanied by an increasing prevalence of complications. The percentages of MAPChD beneficiaries who did not sign a consent document for research were 3.1% and 6.3% in 2002 and 2003, respectively. Following the legislation, both inpatients and outpatients younger than 20 years with any of 514 chronic diseases became eligible, and MAPChD began providing welfare services to these patients. The establishment of a MAPChD database is necessary for further research. It is expected that, in future, more beneficiaries of MAPChD will join the research program. One of the major challenges faced by long-term survivors of childhood MAPChD diseases is making the transition from a specialized pediatric care facility to an adult health care system. In 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest registration data and discuss the future prospects of MAPChD. The differences in MAPChD content before and after legislation were compared.BACKGROUNDIn 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest registration data and discuss the future prospects of MAPChD. The differences in MAPChD content before and after legislation were compared.The subjects were MAPChD-registered patients whose guardians had signed a consent document for the children to join a MAPChD research program during the fiscal years 2002-2003. The nationwide electronic registration data were gathered and analyzed, and the official documents about MAPChD were reviewed and summarized.METHODSThe subjects were MAPChD-registered patients whose guardians had signed a consent document for the children to join a MAPChD research program during the fiscal years 2002-2003. The nationwide electronic registration data were gathered and analyzed, and the official documents about MAPChD were reviewed and summarized.Given that the overall population was aged 0-19 years, there were four MAPChD beneficiaries for every 1000 children in Japan. Moreover, the prolonged survival of MAPChD patients was accompanied by an increasing prevalence of complications. The percentages of MAPChD beneficiaries who did not sign a consent document for research were 3.1% and 6.3% in 2002 and 2003, respectively. Following the legislation, both inpatients and outpatients younger than 20 years with any of 514 chronic diseases became eligible, and MAPChD began providing welfare services to these patients.RESULTSGiven that the overall population was aged 0-19 years, there were four MAPChD beneficiaries for every 1000 children in Japan. Moreover, the prolonged survival of MAPChD patients was accompanied by an increasing prevalence of complications. The percentages of MAPChD beneficiaries who did not sign a consent document for research were 3.1% and 6.3% in 2002 and 2003, respectively. Following the legislation, both inpatients and outpatients younger than 20 years with any of 514 chronic diseases became eligible, and MAPChD began providing welfare services to these patients.The establishment of a MAPChD database is necessary for further research. It is expected that, in future, more beneficiaries of MAPChD will join the research program. One of the major challenges faced by long-term survivors of childhood MAPChD diseases is making the transition from a specialized pediatric care facility to an adult health care system.CONCLUSIONSThe establishment of a MAPChD database is necessary for further research. It is expected that, in future, more beneficiaries of MAPChD will join the research program. One of the major challenges faced by long-term survivors of childhood MAPChD diseases is making the transition from a specialized pediatric care facility to an adult health care system. |
| Author | Harada, Shohei Sato, Yuki Kato, Tadaaki Kakee, Naoko Gu, Yan-Hong |
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| CitedBy_id | crossref_primary_10_1016_j_jpeds_2014_12_063 crossref_primary_10_1016_j_jpeds_2009_12_051 crossref_primary_10_1017_S1047951122000555 crossref_primary_10_1507_endocrj_K08E_144 crossref_primary_10_5582_irdr_2021_01145 crossref_primary_10_1186_s12913_016_1854_z crossref_primary_10_1016_j_braindev_2012_01_012 crossref_primary_10_1620_tjem_252_365 crossref_primary_10_1016_j_jpeds_2013_11_045 crossref_primary_10_1016_j_jtemb_2014_07_008 crossref_primary_10_1200_OP_21_00364 |
| Cites_doi | 10.1016/j.jpeds.2006.02.010 10.1007/s10545-005-0473-3 10.1111/j.1365-2214.1983.tb00325.x 10.1620/tjem.204.71 10.1097/00001648-199501000-00009 |
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| References | Gu YH, Lee S, Ushijima H. A study on the needs of medical, maternal and child health care in Chinese women students at the University of Tokyo. Tohoku J. Exp. Med. 2004; 204: 71-8. Hirst MA. Young people with disabilities: What happens after 16? Child Care Health Dev. 1983; 9: 273-84. Gu YH, Kodama H, Shiga K, Nakata S, Yanagawa Y, Ozawa H. A survey of Japanese patients with Menkes disease from 1990 to 2003: Incidence and early signs before typical symptomatic onset, pointing the way to earlier diagnosis. J. Inherit. Metab. Dis. 2005; 28: 473-8. Gu YH, Kodama H, Ozawa H, Harada S, Kato T. Re-estimation of incidence of Menkes disease in Japan using two-source capture-recapture method. Jpn. J. Inherit. Metab. Dis. 2006; 22: 84-7. WHO. ICD-10 International Statistical Classification of Diseases and Related Health Problems. 10th revision. World Health Organization, Geneva, 1992. Japanese Ministry of Health, Labour and Welfare. The official Gazette (Kanpou), Suppl. 26. National Printing Bureau, Tokyo, Japan 10 February 2005. Freed GL, Hudson EJ. Transitioning children with chronic diseases to adult care: Current knowledge, practices, and directions. J. Pediatr. 2006; 148: 824-7. Brenner H. Use and limitations of the capture-recapture method in disease monitoring with two dependent sources. Epidemiology 1995; 6: 42-8. 1998 2006 1983; 9 2004; 204 1992 2006; 148 2005; 28 2006; 22 1995; 6 February 2005 e_1_2_6_8_2 WHO (e_1_2_6_6_2) 1992 (e_1_2_6_5_2) 1998 Gu YH (e_1_2_6_9_2) 2006; 22 e_1_2_6_4_2 e_1_2_6_3_2 Japanese Ministry of Health, Labour and Welfare (e_1_2_6_7_2) 2005 e_1_2_6_12_2 e_1_2_6_13_2 e_1_2_6_2_2 e_1_2_6_10_2 e_1_2_6_11_2 |
| References_xml | – reference: WHO. ICD-10 International Statistical Classification of Diseases and Related Health Problems. 10th revision. World Health Organization, Geneva, 1992. – reference: Japanese Ministry of Health, Labour and Welfare. The official Gazette (Kanpou), Suppl. 26. National Printing Bureau, Tokyo, Japan 10 February 2005. – reference: Gu YH, Kodama H, Shiga K, Nakata S, Yanagawa Y, Ozawa H. A survey of Japanese patients with Menkes disease from 1990 to 2003: Incidence and early signs before typical symptomatic onset, pointing the way to earlier diagnosis. J. Inherit. Metab. Dis. 2005; 28: 473-8. – reference: Brenner H. Use and limitations of the capture-recapture method in disease monitoring with two dependent sources. Epidemiology 1995; 6: 42-8. – reference: Freed GL, Hudson EJ. Transitioning children with chronic diseases to adult care: Current knowledge, practices, and directions. J. Pediatr. 2006; 148: 824-7. – reference: Hirst MA. Young people with disabilities: What happens after 16? Child Care Health Dev. 1983; 9: 273-84. – reference: Gu YH, Kodama H, Ozawa H, Harada S, Kato T. Re-estimation of incidence of Menkes disease in Japan using two-source capture-recapture method. Jpn. J. Inherit. Metab. Dis. 2006; 22: 84-7. – reference: Gu YH, Lee S, Ushijima H. A study on the needs of medical, maternal and child health care in Chinese women students at the University of Tokyo. Tohoku J. Exp. Med. 2004; 204: 71-8. – volume: 148 start-page: 824 year: 2006 end-page: 7 article-title: Transitioning children with chronic diseases to adult care: Current knowledge, practices, and directions publication-title: J. Pediatr – issue: Suppl. 26 year: February 2005 – volume: 204 start-page: 71 year: 2004 end-page: 8 article-title: A study on the needs of medical, maternal and child health care in Chinese women students at the University of Tokyo publication-title: Tohoku J. Exp. Med – year: 1992 – volume: 22 start-page: 84 year: 2006 end-page: 7 article-title: Re‐estimation of incidence of Menkes disease in Japan using two‐source capture‐recapture method publication-title: Jpn. J. Inherit. Metab. Dis – volume: 6 start-page: 42 year: 1995 end-page: 8 article-title: Use and limitations of the capture‐recapture method in disease monitoring with two dependent sources publication-title: Epidemiology – volume: 9 start-page: 273 year: 1983 end-page: 84 article-title: Young people with disabilities: What happens after 16? publication-title: Child Care Health Dev – year: 2006 – year: 1998 – volume: 28 start-page: 473 year: 2005 end-page: 8 article-title: A survey of Japanese patients with Menkes disease from 1990 to 2003: Incidence and early signs before typical symptomatic onset, pointing the way to earlier diagnosis publication-title: J. Inherit. Metab. Dis – ident: e_1_2_6_12_2 doi: 10.1016/j.jpeds.2006.02.010 – volume-title: A Chart for Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (Shoman Hayami Hyo) year: 1998 ident: e_1_2_6_5_2 – volume-title: The official Gazette (Kanpou) year: 2005 ident: e_1_2_6_7_2 – ident: e_1_2_6_3_2 – volume-title: ICD‐10 International Statistical Classification of Diseases and Related Health Problems year: 1992 ident: e_1_2_6_6_2 – volume: 22 start-page: 84 year: 2006 ident: e_1_2_6_9_2 article-title: Re‐estimation of incidence of Menkes disease in Japan using two‐source capture‐recapture method publication-title: Jpn. J. Inherit. Metab. Dis – ident: e_1_2_6_2_2 – ident: e_1_2_6_8_2 doi: 10.1007/s10545-005-0473-3 – ident: e_1_2_6_11_2 doi: 10.1111/j.1365-2214.1983.tb00325.x – ident: e_1_2_6_4_2 doi: 10.1620/tjem.204.71 – ident: e_1_2_6_13_2 – ident: e_1_2_6_10_2 doi: 10.1097/00001648-199501000-00009 |
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| SubjectTerms | Adolescent Adult Child Child Health Services - legislation & jurisprudence Child Health Services - trends Child, Preschool Chronic Disease - epidemiology Chronic Disease - prevention & control Chronic illnesses chronic pediatric diseases disease database disease registration Female Health care policy health policy Health Services Research - legislation & jurisprudence Health Services Research - trends Humans Infant Infant, Newborn Insurance, Health Japan - epidemiology Male medical aid Medical Assistance - legislation & jurisprudence Medical Assistance - trends Medical research National Health Programs - legislation & jurisprudence National Health Programs - trends Pediatrics Prevalence Retrospective Studies Survival Analysis |
| Title | Medical aid program for chronic pediatric diseases of specified categories in Japan: Current status and future prospects |
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