Healthcare Professionals’ Views on the provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England,Wales,and Northern Ireland
Restricted accessResearch articleFirst published online December, 2013
Healthcare Professionals’ Views on the provision of Gastrostomy and Noninvasive Ventilation to Amyotrophic Lateral Sclerosis Patients in England,Wales,and Northern Ireland
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.
RocheJ.C., Rojas-GarciaR., ScottK.M.A proposed staging system for amyotrophic lateral sclerosis.Brain2012; 135(3 Pt): 847–852.
2.
TandenR., BradleyW.G.Amyotrophic lateral sclerosis: part 1. Clinical features, pathology, and ethical issues in management.Ann Neurol1985; 18(3): 271–280.
3.
AndersenP.M., AbrahamsS., BorasioG.D.EFNS guidelines on the clinical management of amyotrophic later sclerosis (MALS) — revised report of an EFNS task force.Eur J Neurol2012; 19(3): 360–375.
4.
MustfaN., WalshE., BryantV.The effect of noninvasive ventilation on ALS patients and their caregivers.Neurology2006; 66(8): 1212–1217.
5.
National Institute for Health and Clinical Excellence.Motor neurone disease: the use of non-invasive ventilation in the management of motor neurone disease. NICE clinical guidelines no. 105.London: Centre for Clinical Practice at NICE; 2010 July.
National Institute for Health and Clinical Excellence.Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition. NICE clinical guidelines no. 32.London: National Collaborating Center for Acute Care; 2006 Feb.
8.
BourkeS.C., WilliamsT.L., BullockR.E.Non-invasive ventilation in motor neurone disease: current UK practice.Amyotroph Lateral Scler Other Motor Neuron Disord2002; 3(3): 145–149.
9.
O'NeillC.L., WilliamsT.L., PeelE.T.Non-invasive ventilation in motor neuron disease, an update of current UK practice.J Neurol Neurosurg Psychiatry2011; 83(4): 371–376.
10.
OliverD., CampbellC., SykesN.Decision-making for gastrostomy and ventilatory support for people with motor neurone disease: variations across UK hospices.J Palliat Care2011; 27(3): 198–201.
11.
HardartM.K., BurnsJ.P., TruogR.D.Respiratory support in spinal muscular atrophy type I: a survey of physician practices and attitudes.Pediatrics2002; 110(2 Pt 1): e24.
12.
BensonR.C., HardyK.A., GildengorinG.International survey of physician recommendation for tracheostomy for spinal muscular atrophy type I.Pediatr Pulmonol2012; 47(6): 606–611.
13.
KareusS.A., KagebeinS., RudnickiS.A.The importance of a respiratory therapist in the ALS clinic.Amyotroph Lateral Scler2008; 9(3): 173–176.
AgrestiA.Categorical data analysis.2nd ed.New York: Wiley; 2002.
16.
LandisJ.R., KochG.G.The measurement of observer agreement for categorical data.Biometrics1977; 33(1): 159–174.
17.
BradleyM.D., OrrellR.W., ClarkeJ.Outcome of ventilatory support for acute respiratory failure in motor neurone disease.J Neurol Neurosurg Psychiatry2002; 72(6): 752–756.
18.
VianelloA., ArcaroG., PalmieriA.Survival and quality of life after tracheostomy for acute respiratory failure in patients with amyotrophic lateral sclerosis.J Crit Care2011; 26(3): 329 e7-e14.
19.
YoungJ.M., MarshallC.L., AndersonE.J.Amyotrophic lateral sclerosis patients’ perspectives on use of mechanical ventilation.Health Soc Work1994; 19(4): 253–260.
20.
HeffernanC., JenkinsonC., HolmesT.Management of respiration in MND/ALS patients: an evidence based review.Amyotroph Lateral Scler2006; 7(1): 5–15.
21.
Rowe-HaynesC., FaullC., OliverD.Exploring issues for doctors surrounding the withdrawal of NIV at the request of patients with MND.BMJ Support Palliat Care2012; 2: A34.
22.
RioA., CawadiasE.Nutritional advice and treatment by dieticians to patients with amyotrophic lateral sclerosis/motor neurone disease: a survey of current practice in England, Wales, Northern Ireland and Canada.J Hum Nutr Diet2007; 20(1): 3–13.
23.
AchiE.Y., RudnickiS.A.ALS and frontotemporal dysfunction: a review.Neurol Res Int2012: 806306. Epub 2012 Aug 7.
24.
ChioA., IlardiA., CammarosanoS.Neurobehavioral dysfunction in ALS has a negative effect on outcome and use of PEG and NIV.Neurology2012; 78(14): 1085–1089.
25.
OlneyR.K., MurphyJ., ForshewD.The effects of behavioural and executive dysfunction on the course of ALS.Neurology2005; 65(11): 1774–1777.
