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- Tamatha O Ruffell, Naomi H Martin, Anna Janssen, Lokesh Wijesekera, Catherine Knights, Rachel Burman, David J Oliver, Ammar Al-Chalabi, and Laura H Goldstein.
- King's College London, Institute of Psychiatry, London, UK
- J Palliat Care. 2013 Jan 1; 29 (4): 225-31.
AbstractGastrostomy 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.
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