Healthcare Professionals’ Views on the provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England, Wales, and Northern Ireland-Reference-Cited by-同舟云学术

Healthcare Professionals’ Views on the provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England, Wales, and Northern Ireland

Published:2013-12 Issue:4 Volume:29 Page:225-231
ISSN:0825-8597
Container-title:Journal of Palliative Care
language:en
Short-container-title:J Palliat Care

Author:

Ruffell Tamatha O.¹,Martin Naomi H.¹,Janssen Anna¹,Wijesekera Lokesh²,Knights Catherine³,Burman Rachel⁴,Oliver David J.⁵,Al-Chalabi Ammar⁶,Goldstein Laura H.⁷

Affiliation:

1. King's College London, Institute of Psychiatry, London, UK

2. KHP Centre for Neurodegeneration Research, King's College London, Institute of Psychiatry, London, UK

3. King's MND Care and Research Centre, King's College London, London, UK

4. King's College Hospital NHS Foundation Trust, Cicely Saunders Institute, London, UK

5. Wisdom Hospice, Rochester, and the Centre for Professional Practice, University of Kent, Chatham, UK

6. KHP Centre for Neurodegeneration Research, King's College London, Institute of Psychiatry, and Department of Clinical Neuroscience, King's College London, Institute of Psychiatry, London, UK

7. LH Goldstein (corresponding author): Department of Psychology, King's College London, Institute of Psychiatry, Box PO77, Henry Wellcome Building, De Crespigny Park, Denmark Hill, London SE5 8AF UK;

Abstract

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.

Publisher

SAGE Publications

Subject

General Medicine

Link

http://journals.sagepub.com/doi/pdf/10.1177/082585971302900404

Reference24 articles.

1. A proposed staging system for amyotrophic lateral sclerosis

2. Amyotrophic lateral sclerosis: Part 1. Clinical features, pathology, and ethical issues in management

3. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) – revised report of an EFNS task force

4. The effect of noninvasive ventilation on ALS patients and their caregivers

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