title: Healthcare professionals' 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' 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.
authors.affiliation: King's College London, Institute of Psychiatry, London, UK
authors.forename: Tamatha O
authors.initials: TO
authors.lastname: Ruffell
authors.affiliation: King's College London, Institute of Psychiatry, London, UK
authors.forename: Naomi H
authors.initials: NH
authors.lastname: Martin
authors.affiliation: King's College London, Institute of Psychiatry, London, UK
authors.forename: Anna
authors.initials: A
authors.lastname: Janssen
authors.affiliation: KHP Centre for Neurodegeneration Research, King's College London, Institute of Psychiatry, London, UK.
authors.forename: Lokesh
authors.initials: L
authors.lastname: Wijesekera
authors.affiliation: King's MND Care and Research Centre, King's College London, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Knights
authors.affiliation: King's College Hospital NHS Foundation Trust, Cicely Saunders Institute, London, UK.
authors.forename: Rachel
authors.initials: R
authors.lastname: Burman
authors.affiliation: Wisdom Hospice, Rochester, UK.
authors.forename: David J
authors.initials: DJ
authors.lastname: Oliver
authors.affiliation: KHP Centre for Neurodegeneration Research, King's College London, Institute of Psychiatry, London, UK.
authors.forename: Ammar
authors.initials: A
authors.lastname: Al-Chalabi
authors.affiliation: Department of Psychology, King's College London, Institute of Psychiatry, Denmark Hill, London, UK.
authors.forename: Laura H
authors.initials: LH
authors.lastname: Goldstein
mesh_terms: D000328:Adult; D000488:Allied Health Personnel / Q000523:psychology; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications*; D001291:Attitude of Health Personnel; D004739:England; D005260:Female; D005774:Gastrostomy / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D063087:Noninvasive Ventilation / Q000706:statistics & numerical data*; D009660:Northern Ireland; D010166:Palliative Care; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data*; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014852:Wales