Palliative care guideline for neurological diseases “muscular dystrophy”

DOI
  • Saito Toshio
    Division of Child Neurology, Department of Neurology, National Hospital Organization Osaka Toneyama Medical Center
  • Nozaki Fumihito
    Department of Pediatrics, Shiga Medical Center for Children
  • Inoue Kenji
    Department of Pediatrics, Shiga Medical Center for Children
  • Ogata Katsuhisa
    Department of Neurology, National Hospital Organization Higashisaitama Hospital

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Other Title
  • 神経疾患の緩和ケアガイドライン「筋ジストロフィー」

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<p>In the palliative care guideline for neurological diseases “muscular dystrophy,” we have set the following six Q&As. “Does palliative care for muscular dystrophy differ depending on the disease type?”, “When should palliative care be started for muscular dystrophy?”, “What kind of painful symptoms occur in muscular dystrophy?”, “How should we perform advanced care planning for muscular dystrophy?”, “How can we support the families and caregivers of patients with muscular dystrophy?” and “Under what conditions should opioids be used in patients with muscular dystrophy?” This report provides an overview of the underlying muscular dystrophy symptoms and their palliative care. The main symptom of muscular dystrophy is motor dysfunction due to skeletal muscle damage, but accompanying this, various functional disorders and complications occur. Muscular dystrophy includes a variety of disease types and conditions, making it difficult to provide a uniform treatment. It is essential to fully understand the disease, including its prognosis and natural history, and palliative care based on individuality is necessary. In ACP for muscular dystrophy, it is important to have repeated discussions with the patients, families, and medical/care team, and multidisciplinary collaboration is necessary. The main painful symptoms of muscular dystrophy include pain and dyspnea, and painful symptoms that warrant the use of opioids can occur in muscular dystrophy. The guideline is expected to contribute to future medical treatment of muscular dystrophy.</p>

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