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  [in Japanese] Preparations and Realities Regarding Physical Emergency Among in-home Amyotrophic Lateral Sclerosis Patients  [in Japanese]

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Abstract

<b>目 的:</b>筋萎縮性側索硬化症 (ALS) の病状は進行予測が難しく, 在宅療養中に急変して緊急入院となることがある. そのため, 急変時の対応を整備する必要がある. 本研究目的は, 在宅ALS療養者の急変時対応の認識と実態を明らかにすることである.<br><b>方 法:</b>A大学病院神経内科でALSの診断を受け2011~2013年の間に外来受診歴がある患者とALS患者会関係者5名を含めた計77名. 郵送法による質問票調査を実施した. 倫理的配慮は, 群馬大学医学部疫学研究に関する倫理審査会にて承認を得た.<br><b>結 果:</b>回収は42件 (回収率55%) で, 有効回答41件を分析した. 急変経験者は17名, 未経験者は24名であった. 自宅での急変に備えて, 事前に医療の対応方法に関する意思表明は「必要はない」「わからない」は, 経験者6名, 未経験者9名. 理由は, 「まだ大丈夫だと思っている」, 「症状が軽いから」などであった. 急変時に最初にする連絡先は, 「決まっていない」が, 急変経験者0名, 未経験者10名であった. 急変経験者17名の急変の回数は, 1回が11名, 2回が2名, 3回以上が2名であった.<br><b>結 論:</b>急変未経験者は, 急変経験者に比べ急変時対応の認識が希薄で対応方法が未整備であることが明らかとなった. 早期から急変時の対応方法について患者教育をする必要がある.

<b>Purpose:</b> The purpose of this study was to clarify the preparations and realities regarding emergency on physical condition among in-home amyotrophic lateral sclerosis (ALS) patients for effective countermeasure.<br><b>Methods:</b> The participants were 72 patients with ALS who were treated at University Hospital A between 2011 and 2013, and 5 people involved with an ALS patient association. A questionnaire survey was conducted by mail. The study was approved by the University Ethics Committee.<br><b>Results:</b> Out of 77 participants, 42 responded (55% response rate), of which 41 responses were valid. Seventeen patients had experienced an emergency sudden change in their conditions, and 24 had no such experience. Nine patients who had not had such an experience selected either "<I>Not necessary</I> " or "<I>Not sure</I> " when asked about their advanced directives. Reasons for these responses were <I>"I'm fine at the moment</I> " and "<I>My symptoms are mild</I> ". First contact at emergency was listed as "<I>Not decided</I> " by none who had experienced physical emergency and 10 patients who had not. The number of emergency episode was 1 in 11 patients, 2 in 2 patients, and 3 or more episodes in 2 patients.<br><b>Conclusions:</b> The study findings showed that patients who had not experienced an emergency in their ALS were less aware and less prepared for their emergency than their counterparts with such an experience. The findings suggest the need for better education on early preparations for emergency in ALS symptoms.

Journal

  • The Kitakanto Medical Journal

    The Kitakanto Medical Journal 65(1), 77-82, 2015

    The Kitakanto Medical Society

Codes

  • NII Article ID (NAID)
    130005060949
  • NII NACSIS-CAT ID (NCID)
    AN10585677
  • Text Lang
    JPN
  • Article Type
    journal article
  • ISSN
    1343-2826
  • NDL Article ID
    026185028
  • NDL Call No.
    Z19-138
  • Data Source
    NDL  IR  J-STAGE 
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