2018 Fiscal Year Final Research Report
Illness narratives of genetic diseases and how to cope with the new issues from new therapeutic agents
| Project/Area Number |
16K12034
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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 |
Clinical nursing
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| Research Institution | Tokyo Metropolitan University |
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Principal Investigator |
NISHIMURA yumi 首都大学東京, 人間健康科学研究科, 教授 (00257271)
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| Co-Investigator(Kenkyū-buntansha) |
前田 泰樹 立教大学, 社会学部, 教授 (00338740)
西垣 昌和 京都大学, 医学研究科, 准教授 (20466741)
溝口 満子 一宮研伸大学, 看護学部, 教授 (40149430)
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| Research Collaborator |
HODOUCHI eiko
MATSUMOTO chikako
YAMAJI yukio
NUTO satoshi
MOCHIZUKI toshio
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| Project Period (FY) |
2016-04-01 – 2019-03-31
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| Keywords | 遺伝性疾患 / 常染色体優性遺伝多発性嚢胞腎 / 病いの語り / QOL |
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| Outline of Final Research Achievements |
Patients with genetic diseases and their families’ daily life are often greatly affected the launching of new therapeutic strategies. The new therapeutic strategy would affect them variously, in terms of their disease experience, quality of life, and their daily routine. Prompt research in the timing of new therapeutic strategy launches is therefore essential. In this study, we focused on autosomal dominant polycystic kidney disease (ADPKD) while new therapeutic agent, Tolvaptan, has been launched recently. The aim of this study is to clarify the necessary tasks and new arising issues in their life as a result of the new therapeutic agent. This study was conducted by a survey, telephone calls and face-to-face interviews.
Based on these results, we created a website called "Life tips" consisting of links to specific experiences of patients such as " Good life routines," "How to live ADPKD," "How to connect with the proper medical care," and "Talking about an illness to someone".
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| Free Research Field |
看護学
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| Academic Significance and Societal Importance of the Research Achievements |
新たな治療法の臨床試験、新薬の認可、難病法による医療費助成の対象となるなどの複数の変化の渦中にいるADPKD患者の病い経験の実態、生活の質、及び新たな課題を明らかにする本研究は、患者や家族などの当事者においては、参照できる他者の経験や悩み、特に、病気を誰かに話すことに関する考え方などに触れる機会となり、医療者にとっては、医療、ケア、支援の焦点や方法を検討する資料となり得る。
新たな治療法である新薬トルバプタンは、わが国で最初に認可（2014年）され、使用されている。それ故、本研究の成果は、その後に認可された国、今後認可され得る国でも活用可能な知見となり、国際的な貢献が期待される。
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