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End-of-life and palliative care for individuals with amyotrophic lateral sclerosis receiving NPPV

Research Project

Project/Area Number 15K11617
Research Category

Grant-in-Aid for Scientific Research (C)

Allocation TypeMulti-year Fund
Section一般
Research Field Clinical nursing
Research InstitutionGunma University

Principal Investigator

Ushikubo Mitsuko  群馬大学, 大学院保健学研究科, 教授 (90213412)

Co-Investigator(Renkei-kenkyūsha) IIDA Mitsue  群馬県立県民健康科学大学, 看護学部, 准教授 (80272269)
SUZUKI Miyuki  群馬県立県民健康科学大学, 看護学部, 講師 (90554402)
SASAKI Kyoko  群馬県立県民健康科学大学, 看護学部, 助教 (20334104)
Project Period (FY) 2015-04-01 – 2018-03-31
Project Status Completed (Fiscal Year 2017)
Budget Amount *help
¥2,730,000 (Direct Cost: ¥2,100,000、Indirect Cost: ¥630,000)
Fiscal Year 2017: ¥650,000 (Direct Cost: ¥500,000、Indirect Cost: ¥150,000)
Fiscal Year 2016: ¥1,170,000 (Direct Cost: ¥900,000、Indirect Cost: ¥270,000)
Fiscal Year 2015: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
KeywordsALS / NPPV / 終末期 / 呼吸不全 / 緩和ケア / 筋萎縮性側索硬化症 / エンドオブライフケア / 非がん / 死亡事例
Outline of Final Research Achievements

The purpose of this study was to clarify the course and situations in the terminal stage of ALS patients who do not wish to transit to TPPV from NPPV, and to propose palliative care for ALS patients under NPPV management. We conducted various surveys for ward nurses and home visiting nurses, medical chart review survey on hospital death, survey for qualified nurses such as certified nurse specialists etc.It became clear that NPPV was used until death and the painful situation in the last month of life was great. In addition, we could not find any research on palliative care when NPPV can no longer palliative respiratory insufficiency. We should learn clinical practice of other countries. We need to develop interdisciplinary guidelines on terminal withdrawal of NPPV that take cultural background into account.

Report

(4 results)
  • 2017 Annual Research Report   Final Research Report ( PDF )
  • 2016 Research-status Report
  • 2015 Research-status Report
  • Research Products

    (32 results)

All 2018 2017 2016 2015

All Journal Article (11 results) (of which Peer Reviewed: 11 results,  Open Access: 4 results,  Acknowledgement Compliant: 3 results) Presentation (17 results) (of which Int'l Joint Research: 9 results,  Invited: 1 results) Book (4 results)

  • [Journal Article] Circumstances and signs of approaching death in patients with amyotrophic lateral sclerosis undergoing noninvasive ventilation in home care settings2018

    • Author(s)
      Mitsuko Ushikubo
    • Journal Title

      JNN

      Volume: 50 Issue: 3 Pages: 182-186

    • DOI

      10.1097/jnn.0000000000000362

    • Related Report
      2017 Annual Research Report
    • Peer Reviewed
  • [Journal Article] Pain at end-of-life among patients with amyotrophic lateral sclerosis receiving non-ninvasive ventilation2017

    • Author(s)
      Mitsuko Ushikubo, Noriko Tsukagoshi, Midori Shimizu, Yoko Takahashi
    • Journal Title

      IJND

      Volume: 7 Issue: 7 Pages: 36-39

    • DOI

      10.15520/ijnd.2017.vol7.iss7.233.36-39

    • Related Report
      2017 Annual Research Report
    • Peer Reviewed / Open Access
  • [Journal Article] Literature Review of Palliative End-of-Life Care for Patients with Amyotrophic Lateral Sclerosis under Non-invasive Positive-pressure Ventilation2017

    • Author(s)
      牛久保美津子、飯田苗恵、鈴木美雪、佐々木馨子
    • Journal Title

      The Kitakanto Medical Journal

      Volume: 67 Issue: 1 Pages: 55-62

    • DOI

      10.2974/kmj.67.55

    • NAID

      130005549003

    • ISSN
      1343-2826, 1881-1191
    • Related Report
      2017 Annual Research Report
    • Peer Reviewed / Open Access
  • [Journal Article] Circumstances of Patients with Amyotrophic Lateral Sclerosis Transferred to Other Hospitals after Emergency Hospitalization and Challenges in Post-Discharge Support2017

    • Author(s)
      中川裕
    • Journal Title

      JOURNAL OF THE JAPANESE ASSOCIATION OF RURAL MEDICINE

      Volume: 65 Issue: 5 Pages: 969-975

    • DOI

      10.2185/jjrm.65.969

    • NAID

      130005464052

    • ISSN
      0468-2513, 1349-7421
    • Related Report
      2017 Annual Research Report 2016 Research-status Report
    • Peer Reviewed / Open Access
  • [Journal Article] 非がん疾患の呼吸不全に対する非侵襲的換気療法下での終末期に関する文献検討ー筋萎縮性側索硬化症と慢性心不全2017

    • Author(s)
      牛久保美津子、飯田苗恵、鈴木美雪、佐々木馨子
    • Journal Title

      群馬保健学研究

      Volume: 38 Pages: 113-120

    • Related Report
      2017 Annual Research Report
    • Peer Reviewed / Open Access
  • [Journal Article] 筋萎縮性側索硬化症者の非侵襲的陽圧換気療法下の終末期ケアに関する文献検討2017

    • Author(s)
      牛久保美津子、飯田苗恵、鈴木美雪、佐々木馨子
    • Journal Title

      The Kitakanto Medical Journal

      Volume: 67 Pages: 55-62

    • NAID

      130005549003

    • Related Report
      2016 Research-status Report
    • Peer Reviewed
  • [Journal Article] Respite Care Services for Patients with Amyotrophic Lateral Sclerosis and Their Families form the Perspective of Home Care Nurses2016

    • Author(s)
      Ushikubo M, Suzuki S
    • Journal Title

      Home Health Care Management & Practice

      Volume: 28(1) Pages: 44-50

    • Related Report
      2016 Research-status Report
    • Peer Reviewed
  • [Journal Article] Respite Care Services for Patients With Amyotrophic lateral Sclerosis and Their Families From the Perspective of Home Care Nurses2015

    • Author(s)
      Ushikubo M, Suzuki S
    • Journal Title

      Home health Care Management & Practice

      Volume: 28(1) Issue: 1 Pages: 44-50

    • DOI

      10.1177/1084822315599953

    • Related Report
      2015 Research-status Report
    • Peer Reviewed / Acknowledgement Compliant
  • [Journal Article] 在宅筋萎縮性側索硬化症療養者の急変時対応に関する認識と実態2015

    • Author(s)
      大谷忠広、牛久保美津子、川尻洋美、中川裕、飯田苗恵、岡本幸市
    • Journal Title

      THE KITAKANTO MEDICAL JOURNAL

      Volume: 65(1) Pages: 77-82

    • NAID

      130005060949

    • Related Report
      2015 Research-status Report
    • Peer Reviewed
  • [Journal Article] Comparison Between Home and Hospital as the Place of Death fro Individuals With Amyotrophic Lateral Sclerosis in the Last Stages of Illness2015

    • Author(s)
      Mitsuko Ushikubo
    • Journal Title

      American Journal of Hospice & Palliative Medicine

      Volume: 32(4) Pages: 417-426

    • Related Report
      2015 Research-status Report
    • Peer Reviewed / Acknowledgement Compliant
  • [Journal Article] 在宅筋萎縮性側索硬化症療養者のエンド・オブ・ライフにおける地域連携のあり方2015

    • Author(s)
      中川 裕、牛久保美津子
    • Journal Title

      群馬保健学紀要

      Volume: 36 Pages: 97-101

    • NAID

      40020786683

    • Related Report
      2015 Research-status Report
    • Peer Reviewed / Acknowledgement Compliant
  • [Presentation] Literature review regarding palliative care at the end-of-life among people with amyotrophic lateral sclerosis under rnon-invasive ventilation2017

    • Author(s)
      Ushikubo M, Iida M, Suzuki M, Sasaki K
    • Organizer
      APHC (Asia Pacific Hospice conference) 2017
    • Related Report
      2017 Annual Research Report
    • Int'l Joint Research
  • [Presentation] 非侵襲的換気療法での終末期と緩和ケアの状況2017

    • Author(s)
      飯田苗恵、鈴木美雪、佐々木馨子、牛久保美津子
    • Organizer
      日本難病看護学会
    • Related Report
      2017 Annual Research Report
  • [Presentation] 群馬大学神経内科看護相談活動の7年間の推移2017

    • Author(s)
      冨田千恵子、猪熊綾子、牛久保美津子
    • Organizer
      日本難病看護学会
    • Related Report
      2017 Annual Research Report
  • [Presentation] 非がん疾患の呼吸不全に対する非侵襲的陽圧換気療法に関する文献検討2016

    • Author(s)
      牛久保美津子、飯田苗恵、鈴木美雪、佐々木馨子
    • Organizer
      第36回日本看護科学学会
    • Place of Presentation
      東京 国際フォーラム
    • Year and Date
      2016-12-10
    • Related Report
      2016 Research-status Report
  • [Presentation] 神経難病と在宅看護2016

    • Author(s)
      牛久保美津子
    • Organizer
      第5回日本プライマリケア連合学会関東甲信越ブロック地方会
    • Place of Presentation
      群馬 前橋市 社会福祉総合会館
    • Year and Date
      2016-11-27
    • Related Report
      2016 Research-status Report
    • Invited
  • [Presentation] Challenges in Home Care Nursing to Meet ADL Request of Severely Disabled Patients with Amyotrophic Lateral Sclerosis2016

    • Author(s)
      Ushikubo M, Iwamoto M, Tomita C, Inokuma A, Saito Y
    • Organizer
      21st Congress on Palliative Care
    • Place of Presentation
      カナダ モントリオール
    • Year and Date
      2016-10-18
    • Related Report
      2016 Research-status Report
    • Int'l Joint Research
  • [Presentation] NPPVを装着したALS療養者の終末期における苦痛の様相2016

    • Author(s)
      阿部百合恵、牛久保美津子、塚越徳子、橋本友美、清水みどり、高橋陽子
    • Organizer
      第21回日本難病看護学会
    • Place of Presentation
      北海道石狩郡 北海道医療大学
    • Year and Date
      2016-08-27
    • Related Report
      2016 Research-status Report
  • [Presentation] 神経内科看護祖津案活動からみた筋萎縮性側索硬化症療養者への支援課題2016

    • Author(s)
      冨田千恵子、猪熊綾子、斉藤由美子、牛久保美津子
    • Organizer
      第21回日本難病看護学会
    • Place of Presentation
      北海道石狩郡 北海道医療大学
    • Year and Date
      2016-08-27
    • Related Report
      2016 Research-status Report
  • [Presentation] NPPV管理下で病院死した筋萎縮性側索硬化症療養者の遺族による介護生活の振り返り2015

    • Author(s)
      高畠奈美子、牛久保美津子、阿部百合恵、高橋陽子
    • Organizer
      第20回日本難病看護学会学術集会
    • Place of Presentation
      大田区産業プラザPio 東京都大田区
    • Year and Date
      2015-07-24
    • Related Report
      2015 Research-status Report
    • Int'l Joint Research
  • [Presentation] 病状進行の速い人工呼吸器非装着ALS療養者の訪問看護支援と看取り後の家族の思い2015

    • Author(s)
      佐々木馨子、飯田苗恵、友松幸子、牛久保美津子
    • Organizer
      第20回日本難病看護学会学術集会
    • Place of Presentation
      大田区産業プラザPio 東京都大田区
    • Year and Date
      2015-07-24
    • Related Report
      2015 Research-status Report
    • Int'l Joint Research
  • [Presentation] NPPV管理下の筋萎縮性側索硬化症療養者の死亡状況と死期予測に関する検討2015

    • Author(s)
      牛久保美津子、橋本友美、飯田苗恵、佐々木馨子
    • Organizer
      第20回日本難病看護学会学術集会
    • Place of Presentation
      大田区産業プラザPio 東京都大田区
    • Year and Date
      2015-07-24
    • Related Report
      2015 Research-status Report
    • Int'l Joint Research
  • [Presentation] 人工呼吸療法非選択の筋萎縮性側索硬化症療養者の死亡状況と緩和ケア2015

    • Author(s)
      飯田苗恵、佐々木馨子、牛久保美津子、橋本友美
    • Organizer
      第20回日本難病看護学会学術集会
    • Place of Presentation
      大田区産業プラザPio 東京都大田区
    • Year and Date
      2015-07-24
    • Related Report
      2015 Research-status Report
    • Int'l Joint Research
  • [Presentation] 緊急入院後に死亡退院した筋萎縮性側索硬化症療養者の死亡までの状況2015

    • Author(s)
      中川裕、牛久保美津子
    • Organizer
      第20回日本難病看護学会学術集会
    • Place of Presentation
      大田区産業プラザPio 東京都大田区
    • Year and Date
      2015-07-24
    • Related Report
      2015 Research-status Report
  • [Presentation] NPPV管理下で死亡した筋萎縮性側索硬化症療養者の終末期に関する看護師の思い2015

    • Author(s)
      阿部百合恵、塚越徳子、牛久保美津子
    • Organizer
      第20回日本難病看護学会学術集会
    • Place of Presentation
      大田区産業プラザPio 東京都大田区
    • Year and Date
      2015-07-24
    • Related Report
      2015 Research-status Report
    • Int'l Joint Research
  • [Presentation] 群馬大学医学部附属病院が行う「神経内科看護相談」の特徴と活動報告2015

    • Author(s)
      冨田千恵子、牛久保美津子、市川幸恵、猪熊綾子、齋藤由美子、渡邊充子、池田佳生
    • Organizer
      第56回日本神経学会学術大会
    • Place of Presentation
      朱鷺メッセ、新潟県新潟市
    • Year and Date
      2015-05-20
    • Related Report
      2015 Research-status Report
  • [Presentation] 全国の難病相談支援センターにおける相談事業の実態と相談支援員の認識2015

    • Author(s)
      川尻洋美、金古さつき、牛久保美津子、松繁卓哉、長嶋和明、池田佳生
    • Organizer
      第56回日本神経学会学術大会
    • Place of Presentation
      朱鷺メッセ、新潟県新潟市
    • Year and Date
      2015-05-20
    • Related Report
      2015 Research-status Report
    • Int'l Joint Research
  • [Presentation] Situations in the Last Month before Death of Patients wiht Amyotrophic Lateral Sclerosis on Non-ninvasive Positive Pressure Ventilation2015

    • Author(s)
      Yurie Abe, Mitsuko Ushikubo, Midori shimizu, Yoko Takahashi
    • Organizer
      14th World Congress of the Europiean Association for Palliative Care (EAPC)
    • Place of Presentation
      Bella center, コペンハーゲン、デンマーク
    • Year and Date
      2015-05-08
    • Related Report
      2015 Research-status Report
    • Int'l Joint Research
  • [Book] Highlights on several underestimated topics in palliative care2017

    • Author(s)
      Mitsuko Ushikubo
    • Publisher
      Intech
    • ISBN
      9789535135654
    • Related Report
      2017 Annual Research Report
  • [Book] 在宅看護論2017

    • Author(s)
      牛久保美津子
    • Publisher
      メヂカルフレンド社
    • ISBN
      9784595317248
    • Related Report
      2017 Annual Research Report
  • [Book] 在宅看護論 (分担執筆)2017

    • Author(s)
      牛久保美津子
    • Publisher
      放送大学 教育振興会
    • Related Report
      2016 Research-status Report
  • [Book] 在宅看護論 (分担執筆:在宅看護と難病ケア)2016

    • Author(s)
      牛久保美津子
    • Publisher
      メヂカルフレンド社
    • Related Report
      2016 Research-status Report

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Published: 2015-04-16   Modified: 2019-03-29  

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