Subjective Quality of Life of Patients With Duchenne Muscular Dystrophy: Challenges Related to Education and Long-Term Prognosis

• YASHIMA Takeshi

  Graduate School of Education, Joetsu University of Education

• KIKUCHI Toshihiko

  Faculty of Education, Mie University

• MURAKAMI Yoshinori

  Graduate School of Education, Miyagi University of Education

• NOGUCHI Kazuhito

  Graduate School of Education, Tohoku University

Bibliographic Information

Other Title

• デュシェンヌ型筋ジストロフィー成人の主観的QOL ―長期的予後を見据えた教育課題の検討―
• デュシェンヌガタ キンジストロフィー セイジン ノ シュカンテキ QOL : チョウキテキ ヨゴ オ ミスエタ キョウイク カダイ ノ ケントウ

Abstract

The survival prognosis of individuals with Duchenne muscular dystrophy (DMD) is markedly improving, and further improvement of their physical function is anticipated. Elementary and secondary education for these individuals should emphasize the long-term prognosis, including after graduation, for children with muscular dystrophy. The purpose of the present study was to examine challenges related to education for children with muscular dystrophy, emphasizing long-term prognosis. After hospitalized adults with muscular dystrophy and no intellectual disabilities (N＝78) completed a questionnaire (WHOQOL-26) with the assistance of hospital staff, the data were analyzed in order to assess the subjective Quality of Life (QOL) of the respondents. The results indicated that the mean subjective Quality of Life score of the participants was equivalent to the average score of individuals in the general population. Increasing the degree of treatment with disease progression decreases the physical aspects of quality of life, but in other aspects, their quality of life was maintained. The results also suggested that the only factor contributing to their overall quality of life was in the psychological area. Based on these results, the discussion deals with 2 challenges related to the education of children with muscular dystrophy: fınding and constructing an appropriate environment for children with muscular dystrophy and fostering positive self-concepts of children with muscular dystrophy.

Journal

• The Japanese Journal of Special Education

  The Japanese Journal of Special Education 58 (1), 1-9, 2020-05-31

  The Japanese Association of Special Education

Keywords

• subjective quality of life (QOL)
• challenges related to education
• long-term prognosis
• self-concept
• individuals with Duchenne muscular dystrophy

Details

• CRID: 1390568949399877504
• NII Article ID: 130008005681
• NII Book ID: AN00172513
• DOI: 10.6033/tokkyou.58.1
• ISSN: 21865132
• ISSN: 03873374
• NDL BIB ID: 030531267
• Web Site: https://ndlsearch.ndl.go.jp/books/R000000004-I030531267
• Web Site: https://www.jstage.jst.go.jp/article/tokkyou/58/1/58_1/_pdf
• Web Site: https://search.jamas.or.jp/link/ui/2020372838
• Text Lang: ja
• Data Source:
  • JaLC
  • NDL
  • Crossref
  • CiNii Articles
  • KAKEN
• Abstract License Flag: Disallowed