title: [Chronological analysis of individually linked data for patients with intractable disease receiving public financial aid for treatment].
abstract: OBJECTIVE
  Nationwide surveys of intractable disease patients receiving public financial aid for treatment were performed by Research Committee for Epidemiology of Intractable Disease (Ministry of Health and Welfare, Japan) 4 times in the past, in 1984, 1988, 1992 and 1997. The purpose of the present study was to clarify the features of continuance with intractable disease patients receiving public financial aid for treatment.
  
  
  METHODS
  Individual information collected by each nationwide survey was linked using the disease, the residence, the sex, and the birth date. The proportion of intractable disease patients according to receipt duration, kind of medical insurance, sex and age was calculated with reference to the disease and an estimation of the receipt persistence rate was calculated for every year. Moreover, in consideration of variation in the data, average receipt persistence rates over years were also calculated.
  
  
  RESULTS
  According to observation on individual patient's follow up, the proportion for which financial aid was discontinued within four years was 25%, while 70% continued receiving aid for at least four years and some 55% for eight or nine years. The proportion of those who continue receiving support long-term is high about the so-called autoimmune diseases, such as systemic lupus erythematosus, Behçet's disease, and the aortic syndrome. In contrast, with diseases having a poor prognosis, such as fulminant hepatitis, amyloidosis, and amyotrophic lateral sclerosis, periods of continuance are short. The proportion needing long-term continuation is higher in women than in men, especially with diseases which have long been eligible for support. However, with diseases for which receipt was started recently, there is a tendency for persistence to be higher in men than in women.
  
  
  CONCLUSIONS
  With reform of insurance systems, including the medical system for intractable diseases, it is predicted that receipt continuation will change with alteration of social factors, and it is necessary to monitor receipt continuation carefully from now on.
authors.affiliation: Department of Public Health, Saitama Medical School.
authors.forename: Satomi
authors.initials: S
authors.lastname: Shibazaki
authors.forename: Masaki
authors.initials: M
authors.lastname: Nagai
authors.forename: Hiroshi
authors.initials: H
authors.lastname: Fuchigami
authors.forename: Motoko
authors.initials: M
authors.lastname: Nishina
authors.forename: Akiko
authors.initials: A
authors.lastname: Ohta
authors.forename: Takashi
authors.initials: T
authors.lastname: Kawamura
authors.forename: Yoshiyuki
authors.initials: Y
authors.lastname: Ohno
mesh_terms: D002388:Catastrophic Illness / Q000191:economics*; D002910:Chronology as Topic; D003625:Data Collection; D005260:Female; D005378:Financial Support; D017048:Health Care Costs / Q000706:statistics & numerical data; D006801:Humans; D007564:Japan; D008297:Male; D008483:Medical Assistance / Q000191:economics*; D009313:National Health Programs / Q000706:statistics & numerical data*; D011632:Public Assistance / Q000706:statistics & numerical data