Survival Prognosis of Japanese With Severe Motor and Intellectual Disabilities Living in Public and Private Institutions Between 1961 and 2003

Tomoyuki Hanaoka,Toshio Nakadate,Katsumi Mita,Reiko Kishi,Azuma Hiramoto,Yasuhiko Egusa,Yasuyuki Suzuki,Kitoku Okada,Shizuo Maruyama

doi:10.2188/jea.je20090024

Abstract

BackgroundAlthough the prognosis for survival in people with severe functional disabilities is a serious concern for their families and health care practitioners, there have been few reports on survival rates for this population. Every year, the Japanese Association of Welfare for Persons with Severe Motor and Intellectual Disability collects anonymous records of individual registrations and deaths from all private and public institutions, excepting national institutions. We used these data to estimate the prognosis for survival.MethodsWe reviewed the records of 3221 people with severe motor and intellectual disabilities (SMID); all subjects had lived in one of 119 public or private institutions in Japan between 1961 and 2003. Kaplan–Meier survival estimates were calculated according to disability type and birth year range.ResultsOf the 3221 persons, 2645 were alive and 576 had died. The survival rate at the age of 20 for all subjects was 79% (95% confidence interval, 78%–81%). Among people who were unable to sit, those with lower intelligence quotients had lower survival rates.ConclusionsThe survival rate among people with SMID housed in public and private institutions in Japan was much worse than that of the general population, and has not improved since the 1960s.

Highlights

Before 1950, Japanese with severe functional disabilities lived with their families and had little chance to receive medical care
According to the standard classification criteria (Oshima’s classification), a person with severe motor and intellectual disabilities (SMID) is defined as one who is bedridden or able to sit, crawl, or walk with support, and has an intelligence quotient (IQ) lower than 35.2 In 2007, there were 119 private and public institutions to care for people with SMID, and 72 national hospitals had special wards to ensure their care
In 1979, the Association of Welfare for Persons with Severe Motor and Intellectual Disability started the annual collection of individual registration records from all private and public institutions

Summary

Introduction

Before 1950, Japanese with severe functional disabilities lived with their families and had little chance to receive medical care. The prognosis for survival in people with severe functional disabilities is a serious concern for their families and health care practitioners, there have been few reports on survival rates for this population. The Japanese Association of Welfare for Persons with Severe Motor and Intellectual Disability collects anonymous records of individual registrations and deaths from all private and public institutions, excepting national institutions. We used these data to estimate the prognosis for survival. Methods: We reviewed the records of 3221 people with severe motor and intellectual disabilities (SMID); all subjects had lived in one of 119 public or private institutions in Japan between 1961 and 2003. Conclusions: The survival rate among people with SMID housed in public and private institutions in Japan was much worse than that of the general population, and has not improved since the 1960s

Methods

Results

Conclusion