Development of cognitive behavioral therapy for myotonic dystrophy type 1 patients
| Project/Area Number |
16K09735
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Multi-year Fund |
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| Section | 一般 |
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| Research Field |
Neurology
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| Research Institution | National Center of Neurology and Psychiatry |
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Principal Investigator |
Kimura En 国立研究開発法人国立精神・神経医療研究センター, トランスレーショナル・メディカルセンター, 客員研究員 (60433025)
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| Co-Investigator(Kenkyū-buntansha) |
渡辺 範雄 京都大学, 医学研究科, 准教授 (20464563)
菅原 典夫 国立研究開発法人国立精神・神経医療研究センター, トランスレーショナル・メディカルセンター, 室長 (80431435)
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| Research Collaborator |
Endo Makiko
Takada Hiroto
Kon Seiko
Odaira Kaori
Kurauchi Go
Ono Ryohei
Koseki Atsushi
Goto Momoko
Sato Yumi
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| Project Period (FY) |
2016-04-01 – 2019-03-31
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| Project Status |
Completed (Fiscal Year 2018)
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| Budget Amount *help |
¥4,680,000 (Direct Cost: ¥3,600,000、Indirect Cost: ¥1,080,000)
Fiscal Year 2018: ¥1,820,000 (Direct Cost: ¥1,400,000、Indirect Cost: ¥420,000)
Fiscal Year 2017: ¥1,430,000 (Direct Cost: ¥1,100,000、Indirect Cost: ¥330,000)
Fiscal Year 2016: ¥1,430,000 (Direct Cost: ¥1,100,000、Indirect Cost: ¥330,000)
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| Keywords | 筋強直性ジストロフィー / QOL / 介護負担感 / 心理社会的アプローチ / CBT / 神経心理学的アプローチ / 介護負担 / 認知行動療法 / 神経内科学 / 臨床神経心理学 / 筋ジストロフィー |
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| Outline of Final Research Achievements |
Myotonic dystrophy type 1 (DM1) is a disease that presents multi-systemic symptoms and is currently without a cure. Due to these characteristics, an integrated effort by multidisciplinary collaborations to improve patients’ quality of life (QOL) and caregivers’ burden is crucial, alongside drug development initiatives. As a pre-study for the development of psychosocial intervention program, we have performed a study on QOL and caregiving burden of DM1 patients and their caregivers. Findings include the characteristics of these variables and the relationship between these and other variables. These results indicate that the intervention program should involve psychoeducation which promotes a common understanding of the disease between patient and caregiver, and should also focus on increase in activity for the patients. Based on these results, we have initiated the planning process for the development of intervention program.
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| Academic Significance and Societal Importance of the Research Achievements |
十分に効果的な治療法がない中で、多様な症状に苦しむDM1患者とその介護者や家族が慢性的な症状と向き合いながらより生き生きとした人生を送るための支援は重要である。本研究はこのための一歩として、十分に明らかにされていなかった患者QOLと介護者の負担感の傾向を調査し、認知行動療法を基盤とした介入プログラムの開発に取り掛かった。薬の開発と並行して、薬に頼らない心理・社会的な方法を用いたケアの選択肢を患者とその家族や介護者に対して提供するための取り組みとしての意義が本研究にはある。
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Report
(4 results)
Research Products
(4 results)
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[Journal Article] Health-related quality of life and its correlates in Japanese patients with myotonic dystrophy type 12019
Author(s)
Endo M, Odaira K, Ono R, Kurauchi G, Koseki A, Goto M, Sato Y, Kon S, Watanabe N, Sugawara N, Takada H, Kimura E
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Journal Title
Neuropsychiatric Disease and Treatment
Volume: 15
Pages: 219-226
DOI
Related Report
Peer Reviewed / Open Access
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[Presentation] Stronger focus on physical difficulties than on mental aspect in health related quality of life among Japanese myotonic dystrophy type 1 patients.2017
Author(s)
ENDO Makiko, ODAIRA Kaori, ONO Ryohei, KURAUCHI Go, KOSEKI Atsushi, GOTO Momoko, SATO Yumi, KON Seiko, WATANABE Norio, SUGAWARA Norio, TAKADA Hiroto, KIMURA En
Organizer
International Myotonic Dystrophy Consortium Meeting (IDMC-11)
Related Report
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