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Investigation of contributing factors on quality of life in patients with muscular disorders

Research Project

Project/Area Number 17K14067
Research Category

Grant-in-Aid for Young Scientists (B)

Allocation TypeMulti-year Fund
Research Field Special needs education
Research InstitutionOita University

Principal Investigator

Fujino Haruo  大分大学, 教育学部, 准教授 (20707343)

Project Period (FY) 2017-04-01 – 2020-03-31
Project Status Completed (Fiscal Year 2019)
Budget Amount *help
¥4,030,000 (Direct Cost: ¥3,100,000、Indirect Cost: ¥930,000)
Fiscal Year 2019: ¥1,300,000 (Direct Cost: ¥1,000,000、Indirect Cost: ¥300,000)
Fiscal Year 2018: ¥1,430,000 (Direct Cost: ¥1,100,000、Indirect Cost: ¥330,000)
Fiscal Year 2017: ¥1,300,000 (Direct Cost: ¥1,000,000、Indirect Cost: ¥300,000)
Keywords筋疾患 / 筋ジストロフィー / 筋強直性ジストロフィー / 生活の質 / QoL / 疾患特異的患者報告式アウトカム / PRO / マネジメント / 認知機能 / quality of life / アセスメント / 中枢神経症状 / 患者報告式アウトカム / 神経筋疾患 / 病弱 / 心理支援
Outline of Final Research Achievements

Muscle diseases include various forms of the disorders. Muscular dystrophy is a disease characterized by progressive muscular weakness and degeneration of the muscles. Patients’ lives, satisfaction in life, and quality of life is strongly affected by the disorder. In this study, we aimed to investigate the factors related with the quality of life in patients with muscular disorders. We showed that quality of life in patients is associated with cognitive function and psychological factors, as well as severity and duration of the disease. To support quality of life in patients with muscular dystrophy, we need to develop interventions based on these findings.

Academic Significance and Societal Importance of the Research Achievements

本研究の学術的な意義としては、筋強直性ジストロフィー患者において、認知機能や抑うつ、アパシーなどとQoLが関連することを示したことにある。社会的な意義としては、筋強直性ジストロフィーにおける疾患特異的QoL評価方法、患者報告式アウトカム指標を日本人患者において利用可能としたことがある。個々人のQoLは、一般的な評価方法で評価できる場合もあるが、神経筋疾患など症状が重篤な場合には、疾患に対応した評価が必要になるため、今後の治療開発においても重要な知見となる。

Report

(4 results)
  • 2019 Annual Research Report   Final Research Report ( PDF )
  • 2018 Research-status Report
  • 2017 Research-status Report
  • Research Products

    (20 results)

All 2020 2019 2018 2017 Other

All Journal Article (6 results) (of which Int'l Joint Research: 1 results,  Peer Reviewed: 5 results,  Open Access: 1 results) Presentation (12 results) (of which Int'l Joint Research: 5 results) Book (1 results) Remarks (1 results)

  • [Journal Article] Psychological case conference following the death of a patient with neuromuscular disease: A source of emotional support for participating medical staff2020

    • Author(s)
      Fujino H, Saito T, Matsumura T, Fujimura H, Imura O.
    • Journal Title

      Journal of Patient Experience

      Volume: in press Issue: 5 Pages: 713-716

    • DOI

      10.1177/2374373519892413

    • Related Report
      2019 Annual Research Report
    • Peer Reviewed / Open Access
  • [Journal Article] The myotonic dystrophy health index: Japanese adaption and validity testing2019

    • Author(s)
      Mori Itsuki、Fujino Haruo、Matsumura Tsuyoshi、Takada Hiroto、Ogata Katsuhisa、Nakamori Masayuki、Innami Keisuke、Shingaki Honoka、Imura Osamu、Takahashi Masanori P.、Heatwole Chad
    • Journal Title

      Muscle & Nerve

      Volume: 印刷中 Issue: 5 Pages: 577-582

    • DOI

      10.1002/mus.26422

    • Related Report
      2019 Annual Research Report
    • Peer Reviewed / Int'l Joint Research
  • [Journal Article] 病気の子どもへの支援と教育2019

    • Author(s)
      藤野陽生
    • Journal Title

      教育と医学

      Volume: 795 Pages: 754-760

    • Related Report
      2019 Annual Research Report
  • [Journal Article] Cognitive impairment and quality of life in patients with myotonic dystrophy type 12018

    • Author(s)
      Fujino H, Shingaki H, Suwazono S, Ueda Y, Wada C, Nakayama T, Takahashi MP, Imura O, Matsumura T
    • Journal Title

      Muscle & Nerve

      Volume: 57 Issue: 5 Pages: 742-748

    • DOI

      10.1002/mus.26022

    • Related Report
      2018 Research-status Report
    • Peer Reviewed
  • [Journal Article] Autism spectrum disorders are prevalent among patients with dystrophinopathies2018

    • Author(s)
      Fujino H, Saito T, Matsumura T, Shibata S, Iwata Y, Fujimura H, Imura O
    • Journal Title

      Neurological Sciences

      Volume: 39 Issue: 7 Pages: 1279-1282

    • DOI

      10.1007/s10072-018-3341-2

    • Related Report
      2018 Research-status Report
    • Peer Reviewed
  • [Journal Article] Validation of the Individualized Neuromuscular Quality of Life in Japanese patients with myotonic dystrophy2018

    • Author(s)
      Fujino H, Saito T, Takahashi MP, Takada H, Nakayama T, Ogata K, Rose M, Imura O, Matsumura T
    • Journal Title

      Muscle & Nerve

      Volume: in press Issue: 1 Pages: 56-63

    • DOI

      10.1002/mus.26071

    • Related Report
      2017 Research-status Report
    • Peer Reviewed
  • [Presentation] Discrepancy between patient and clinician evaluation of symptoms in myotonic dystrophy2019

    • Author(s)
      Fujino H, Matsumura T, Saito T, Nakayama T, Takahashi MP, Imura O.
    • Organizer
      IDMC-12
    • Related Report
      2019 Annual Research Report
    • Int'l Joint Research
  • [Presentation] Pilot study of cognitive-behavioral therapy for myotonic dystrophy type 1 patients by using a biometric information monitor2019

    • Author(s)
      Ueda Y, Imura O, Shingaki H, Ohno M, Suwazono S, Matsui M, Fujino H, Saito T, Matsumura T, Fujimura H, Takahashi MP.
    • Organizer
      IDMC-12
    • Related Report
      2019 Annual Research Report
    • Int'l Joint Research
  • [Presentation] Prevalence of autism spectrum disorder in Duchenne and Becker muscular dystrophy: A meta-analysis2019

    • Author(s)
      Fujino H, Saito T, Matsumura T, Fujimura H, Imura O.
    • Organizer
      第61回日本小児神経学会学術集会
    • Related Report
      2019 Annual Research Report
  • [Presentation] 筋強直性ジストロフィーの認知機能評価バッテリーの予備的検討2018

    • Author(s)
      藤野陽生, 諏訪園秀吾, 上田幸彦, 新垣ほのか, 松村 剛, 高橋正紀, 井村 修
    • Organizer
      第5回筋ジストロフィーのCNS障害研究会
    • Related Report
      2018 Research-status Report
  • [Presentation] 生体情報端末を利用した筋強直性ジストロフィー(DM1)患者の健康管理プログラムの開発2018

    • Author(s)
      井村修, 藤野陽生
    • Organizer
      2018日本リハビリテイション心理学会学術大会
    • Related Report
      2018 Research-status Report
  • [Presentation] 生体情報端末を利用したDM1における認知行動療法のパイロットスタディ(刀根山病院と大阪大学病院での事例)2018

    • Author(s)
      井村修, 上田幸彦, 藤野陽生, 新垣ほのか, 大野真紀子, 諏訪園秀吾, 松井未紗, 齊藤利雄, 松村剛, 藤村晴俊, 高橋正紀
    • Organizer
      第5回筋ジストロフィー医療研究会
    • Related Report
      2018 Research-status Report
  • [Presentation] 筋疾患を抱える子どもと青年の困難と支援2018

    • Author(s)
      藤野陽生
    • Organizer
      日本特殊教育学会第57回大会
    • Related Report
      2018 Research-status Report
  • [Presentation] 筋ジストロフィー患者が抱える困難への心理支援における課題2018

    • Author(s)
      藤野陽生
    • Organizer
      日本心理学会第82回大会
    • Related Report
      2018 Research-status Report
  • [Presentation] Contributions of cognitive function and psychological variables to QoL in myotonic dystrophy type 12017

    • Author(s)
      Fujino H, Shingaki H, Suwazono S, Ueda Y, Wada C, Nakayama T, Takahashi MP, Imura O, Matsumura T
    • Organizer
      第59回日本小児神経学会学術集会
    • Related Report
      2017 Research-status Report
  • [Presentation] Quality of life is affected by subjective symptom burden in patients with myotonic dystrophy2017

    • Author(s)
      Fujino H, Matsumura T, Takada H, Ogata K, Shingaki H, Imura O, Heatwole CR, Takahashi MP.
    • Organizer
      The 11th International Myotonic Dystrophy Consortium Meeting (IDMC-11)
    • Related Report
      2017 Research-status Report
    • Int'l Joint Research
  • [Presentation] Validation of the Japanese version of the Myotonic Dystrophy Health Index (MDHI)2017

    • Author(s)
      ujino H, Saito T, Takahashi MP, Takada H, Nakayama T, Imura O, Matsumura T
    • Organizer
      The 11th International Myotonic Dystrophy Consortium Meeting (IDMC-11)
    • Related Report
      2017 Research-status Report
    • Int'l Joint Research
  • [Presentation] Executive function may affect the gap between subjective and objective evaluation of symptom severity in patients with myotonic dystrophy2017

    • Author(s)
      Fujino H, Matsumura T, Saito T, Shingaki H, Takahashi MP, Nakayama T, Fujimura H, Imura O
    • Organizer
      The XXIII World Congress of Neurology (WCN 2017)
    • Related Report
      2017 Research-status Report
    • Int'l Joint Research
  • [Book] Clinical Features of the Central Nervous System. Pp.77-94. In: Takahashi M., Matsumura T. (eds) Myotonic Dystrophy: Disease Mechanism, Current Management and Therapeutic Development2018

    • Author(s)
      Fujino H, Suwazono S, Takado Y
    • Total Pages
      18
    • Publisher
      Springer, Singapore
    • ISBN
      9789811305078
    • Related Report
      2018 Research-status Report
  • [Remarks] 筋強直性ジストロフィー患者の認知機能障害とQOLの評価. 筋ジストロフィー研究班からの最新情報

    • URL

      https://www.jmda.or.jp/muscular-dystrophy/research-group-2017/rg2017-09/

    • Related Report
      2017 Research-status Report

URL: 

Published: 2017-04-28   Modified: 2021-02-19  

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