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

Tamatha Ruffell; Naomi Martin; Anna Janssen; Lokesh Wijesekera; Catherine Knights; Rachel Burman; David J. Oliver; Ammar Al-Chalabi; Laura Goldstein

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

Tamatha Ruffell, Naomi Martin, Anna Janssen, Lokesh Wijesekera, Catherine Knights, Rachel Burman, David J. Oliver, Ammar Al-Chalabi, Laura Goldstein

Research output: Contribution to journal › Article › peer-review

11 Citations (Scopus)

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.

Original language	English
Pages (from-to)	225-231
Number of pages	7
Journal	Journal of Palliative Care
Volume	29
Issue number	4
Publication status	Accepted/In press - Dec 2013

Keywords

amyotrophic lateral sclerosis, gastrostomy, noninvasive ventilation, healthcare professionals, palliative care

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http://search.proquest.com/docview/1505253297?accountid=11862

11 Citations
1 Article

Healthcare Professionals’ Views on the Provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England, Wales, and Northern Ireland
Ruffell, T., Martin, N., Janssen, A., Wijesekera, L., Knights, C., Burman, R., Oliver, D. J., Al-Chalabi, A. & Goldstein, L., Dec 2013, (Accepted/In press) In: Journal of Palliative Care. 29, 4, p. 225-231 7 p.
Research output: Contribution to journal › Article › peer-review

Cite this

Ruffell, T., Martin, N., Janssen, A., Wijesekera, L., Knights, C., Burman, R., Oliver, D. J., Al-Chalabi, A., & Goldstein, L. (Accepted/In press). Healthcare Professionals’ Views on the Provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England, Wales, and Northern Ireland. Journal of Palliative Care, 29(4), 225-231. http://search.proquest.com/docview/1505253297?accountid=11862

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title = "Healthcare Professionals{\textquoteright} Views on the Provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England, Wales, and Northern Ireland",

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{\textquoteright} 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. ",

keywords = "amyotrophic lateral sclerosis, gastrostomy, noninvasive ventilation, healthcare professionals, palliative care",

author = "Tamatha Ruffell and Naomi Martin and Anna Janssen and Lokesh Wijesekera and Catherine Knights and Rachel Burman and Oliver, {David J.} and Ammar Al-Chalabi and Laura Goldstein",

year = "2013",

month = dec,

language = "English",

volume = "29",

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journal = "Journal of Palliative Care",

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Ruffell, T , Martin, N , Janssen, A , Wijesekera, L, Knights, C, Burman, R, Oliver, DJ, Al-Chalabi, A & Goldstein, L 2013, 'Healthcare Professionals’ Views on the Provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England, Wales, and Northern Ireland', Journal of Palliative Care, vol. 29, no. 4, pp. 225-231. <http://search.proquest.com/docview/1505253297?accountid=11862>

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T1 - Healthcare Professionals’ Views on the Provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England, Wales, and Northern Ireland

AU - Ruffell, Tamatha

AU - Martin, Naomi

AU - Janssen, Anna

AU - Wijesekera, Lokesh

AU - Knights, Catherine

AU - Burman, Rachel

AU - Oliver, David J.

AU - Al-Chalabi, Ammar

AU - Goldstein, Laura

PY - 2013/12

Y1 - 2013/12

N2 - 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.

AB - 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.

KW - amyotrophic lateral sclerosis, gastrostomy, noninvasive ventilation, healthcare professionals, palliative care

M3 - Article

SN - 0825-8597

VL - 29

SP - 225

EP - 231

JO - Journal of Palliative Care

JF - Journal of Palliative Care

IS - 4

ER -

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

Abstract

Keywords

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Research output

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

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