Ruffell Tamatha O, Martin Naomi H, Janssen Anna, Wijesekera Lokesh, Knights Catherine, Burman Rachel, Oliver David J, Al-Chalabi Ammar, Goldstein Laura H
King's College London, Institute of Psychiatry, London, UK
KHP Centre for Neurodegeneration Research, King's College London, Institute of Psychiatry, London, UK.
J Palliat Care. 2013 Winter;29(4):225-31.
Gastrostomy and noninvasive ventilation (NIV) are recommended interventions for the management of symptoms associated with amyotrophic lateral sclerosis (ALS). This study aimed to quantify the views of a range of healthcare professionals (HCPs) on the provision of these interventions in the United Kingdom. A total of 177 HCPs participated in an online survey. Significant differences were found between medical and allied HCPs' views on: whether HCPs adhere to policy and accept legal constraints when it comes to making gastrostomy available to people with ALS; the impressions that HCPs receive of the way patients and caregivers understand the effects of gastrostomy and NIV on symptoms and quality of life; and the challenges HCPs face when caring for patients who have refused gastrostomy. More widely available guidelines for the provision of gastrostomy and advice on the best way to impart information to patients and caregivers about gastrostomy and NIV appear to be needed.
胃造口术和无创通气（NIV）是推荐用于治疗肌萎缩侧索硬化症（ALS）相关症状的干预措施。本研究旨在量化英国一系列医疗保健专业人员（HCPs）对提供这些干预措施的看法。共有177名HCPs参与了一项在线调查。在以下方面发现了医学和相关HCPs观点的显著差异：在为ALS患者提供胃造口术时，HCPs是否遵守政策并接受法律约束；HCPs对患者和护理人员理解胃造口术和NIV对症状及生活质量影响方式的印象；以及HCPs在照顾拒绝胃造口术的患者时所面临的挑战。似乎需要更广泛可用的胃造口术提供指南以及关于向患者和护理人员传授胃造口术和NIV最佳信息方式的建议。
