title: Social independence of adult congenital heart disease patients in Japan.
abstract: BACKGROUND
  As treatment outcomes for congenital heart disease (CHD) have improved, the social independence of adult CHD patients has become a key goal. The aims of this study were therefore to (i) determine the relationship between social independence and psychological profile, and (ii) identify patient anxieties, difficulties, and demands related to life in society.
  
  
  METHODS
  A total of 143 patients aged ≥15 years with physical disability certificates were selected using a questionnaire distributed by a patients' association. Each participant was asked about employment status, income, and receipt of disability pension as a social independence index, and about financial and psychological distress as a psychological status index. Furthermore, each participant was asked to freely describe his or her difficulties, anxieties, and needs pertaining to life in society.
  
  
  RESULTS
  The subjects were 15-73 years old. Seventy-one (50%) were female, and 94 (66%) had a grade 1 physical disability certificate. Fifty-nine subjects (41%) were employed, 37 (26%) were unemployed, and 45 (31%) were students. Of those employed, 34 subjects (58%) reported annual individual income ≤2 million yen. Frequent hospital visits, low total household income, low individual annual income, work dissatisfaction, and receipt of a disability pension were associated with poorer psychological profile. In an open description section, subjects expressed desires for better pension systems, support for medical fees, and employment support.
  
  
  CONCLUSIONS
  Because financial issues can adversely affect the psychological profiles of adult CHD patients, enhancement of social welfare and employment support may improve their social independence.
authors.affiliation: Department of Adult Nursing, University of Tokyo, Tokyo, Japan.
authors.forename: Ryota
authors.identifier: http://orcid.org/0000-0002-1034-2122
authors.initials: R
authors.lastname: Ochiai
authors.affiliation: Department of Psychology and Social Studies, Wayo Women's University, Chiba, Japan.
authors.forename: Yukitaka
authors.initials: Y
authors.lastname: Ikeda
authors.affiliation: Division of Cardiology, National Medical Center for Children and Mothers, Tokyo, Japan.
authors.forename: Hitoshi
authors.initials: H
authors.lastname: Kato
authors.affiliation: Department of Pediatric Cardiology, National Cerebral and Cardiovascular Center, Osaka, Japan.
authors.forename: Isao
authors.initials: I
authors.lastname: Shiraishi
authors.affiliation: Tokyo, Japan.
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001007:Anxiety / Q000209:etiology; D004185:Disability Evaluation; D004651:Employment / Q000523:psychology* / Q000706:statistics & numerical data; D005260:Female; D006306:Health Surveys; D006330:Heart Defects, Congenital / Q000191:economics / Q000523:psychology*; D006801:Humans; D007182:Income / Q000706:statistics & numerical data; D057187:Independent Living / Q000191:economics / Q000523:psychology*; D007564:Japan; D008297:Male; D008875:Middle Aged; D012931:Social Environment; D012946:Social Welfare / Q000191:economics / Q000523:psychology*; D013315:Stress, Psychological / Q000209:etiology; D055815:Young Adult
keywords: adult congenital heart disease; disability pension; physical disability certificate; social independence; welfare system