Current practices and barriers in gastrostomy indication in amyotrophic lateral sclerosis: a survey of ALS care teams in The Netherlands

References

• Janse Van Mantgem MR, Van Eijk RPA, Van Der Burgh HK, Tan HHG, Westeneng HJ, Van Es MA, et al. Prognostic value of weight loss in patients with amyotrophic lateral sclerosis: a population-based study. J Neurol Neurosurg Psychiatry. 2020;91:867–75.
   PubMed Web of Science ®Google Scholar
• Hobson EV, McDermott CJ. Supportive and symptomatic management of amyotrophic lateral sclerosis. Nat Rev Neurol. 2016;12:526–38.
   PubMed Web of Science ®Google Scholar
• Stavroulakis T, Baird WO, Baxter SK, Walsh T, Shaw PJ, McDermott CJ. Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease. BMJ Support Palliat Care. 2014;4:57–63.
   PubMedGoogle Scholar
• Burgos R, Bretón I, Cereda E, Desport JC, Dziewas R, Genton L, et al. ESPEN guideline clinical nutrition in neurology. Clin Nutr. 2018;37:354–96.
   PubMed Web of Science ®Google Scholar
• National Institute for Health anc Clinical Excellence (2016). Motor neurone disease: assessment and management (NICE guideline).
   Google Scholar
• Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice Parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73:1218–26.
   PubMed Web of Science ®Google Scholar
• van den Berg JP, De Goeijen JC, Kruitwagen-Van Reenen ET, Piepers S, Van Der Kooi AJ, Westermann EJA. Dutch Guideline Percutaneous Endoscopic Gastrostomy (PEG) placement for patients with Amyotrophic Lateral Sclerosis (ALS). 2010. https://www.als-centrum.nl/kennisplatform/richtlijn-peg-plaatsing-bij-als/
   Google Scholar
• Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, et al. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS)-revised report of an EFNS task force. Eur J Neurol. 2012;19:360–75.
   PubMed Web of Science ®Google Scholar
• Martin NH, Lawrence V, Murray J, Janssen A, Higginson I, Lyall R, et al. Decision making about gastrostomy and noninvasive ventilation in amyotrophic lateral sclerosis. Qual Health Res. 2016;26:1366–81.
   PubMed Web of Science ®Google Scholar
• van Es MA, Hardiman O, Chio A, Al-Chalabi A, Pasterkamp RJ, Veldink JH, et al. Amyotrophic lateral sclerosis. Lancet. 2017;390:2084–98.
   PubMed Web of Science ®Google Scholar
• Stavroulakis T, Walsh T, Shaw PJ, McDermott CJ, Progas Study. Gastrostomy use in motor neurone disease (MND): a review, meta-analysis and survey of current practice. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:96–104.
   PubMed Web of Science ®Google Scholar
• Kurien M, Andrews RE, Tattersall R, McAlindon ME, Wong EF, Johnston AJ, et al. Gastrostomies preserve but do not increase quality of life for patients and caregivers. Clin Gastroenterol Hepatol. 2017;15:1047–54.
   PubMedGoogle Scholar
• Group PS. Gastrostomy in patients with amyotrophic lateral sclerosis (ProGas): a prospective cohort study. Lancet Neurol 2015;14:702–9.
   PubMedGoogle Scholar
• Cui F, Sun L, Xiong J, Li J, Zhao Y, Huang X. Therapeutic effects of percutaneous endoscopic gastrostomy on survival in patients with amyotrophic lateral sclerosis: a meta-analysis. PLoS One. 2018;13:e0192243.
   PubMed Web of Science ®Google Scholar
• Stavroulakis T, McDermott CJ. Nutritional support in amyotrophic lateral sclerosis. In Arsava EM, editor. Nutrition in neurologic disorders: Springer; 2017. p. 91–104.
   Google Scholar
• Yang B, Shi X. Percutaneous endoscopic gastrostomy versus fluoroscopic gastrostomy in amyotrophic lateral sclerosis (ALS) sufferers with nutritional impairment: a meta-analysis of current studies. Oncotarget 2017;8:102244–53.
   PubMedGoogle Scholar
• Strijbos D, Keszthelyi D, Gilissen LPL, Lacko M, Hoeijmakers JGJ, van der Leij C, et al. Percutaneous endoscopic versus radiologic gastrostomy for enteral feeding: a retrospective analysis on outcomes and complications. Endosc Int Open. 2019;7:E1487–95.
   PubMedGoogle Scholar
• Hogden A, Greenfield D, Nugus P, Kiernan MC. s. Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care. Health Expect. 2015;18:1769–82.
   PubMed Web of Science ®Google Scholar
• Greenaway LP, Martin NH, Lawrence V, Janssen A, Al-Chalabi A, Leigh PN, et al. Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients' perspectives. J Neurol. 2015;262:1002–13.
   PubMed Web of Science ®Google Scholar
• Bond L, Ganguly P, Khamankar N, Mallet N, Bowen G, Green B, et al. A comprehensive examination of percutaneous endoscopic gastrostomy and its association with amyotrophic lateral sclerosis patient outcomes. Brain Sci. 2019;9:223.
   Web of Science ®Google Scholar
• Vergonjeanne M, Fayemendy P, Marin B, Penoty M, Lautrette G, Sourisseau H, et al. Predictive factors for gastrostomy at time of diagnosis and impact on survival in patients with amyotrophic lateral sclerosis. Clin Nutr. 2020;39:3112–8.
   PubMed Web of Science ®Google Scholar
• Ngo ST, van Eijk RPA, Chachay V, van den Berg LH, McCombe PA, Henderson RD, et al. Loss of appetite is associated with a loss of weight and fat mass in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Front Degener 2019;20:497–505.
   PubMed Web of Science ®Google Scholar
• Ioannides ZA, Ngo ST, Henderson RD, McCombe PA, Steyn FJ. Altered metabolic homeostasis in amyotrophic lateral sclerosis: mechanisms of energy imbalance and contribution to disease progression. Neurodegener Dis. 2016;16:382–97.
   PubMed Web of Science ®Google Scholar
• Benstead T, Jackson-Tarlton C, Leddin D. Nutrition with gastrostomy feeding tubes for amyotrophic lateral sclerosis in Canada. Can J Neurol Sci. 2016;43:796–800.
   PubMed Web of Science ®Google Scholar
• Oliver DJ, Turner MR. Some difficult decisions in ALS/MND. Amyotroph Lateral Scler. 2010;11:339–43.
   PubMed Web of Science ®Google Scholar
• Labra J, Hogden A, Power E, James N, Flood VM. Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients' decision making. BMJ Open. 2020;10:e034751.
   PubMed Web of Science ®Google Scholar
• Foley G, Timonen V, Hardiman O. Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc Sci Med. 2014;101:113–9.
   PubMed Web of Science ®Google Scholar
• Helman CG. Disease versus illness in general practice. J R Coll Gen Pract. 1981;31:548–52.
   PubMedGoogle Scholar
• (NICE) NI for H and CE. Nutrition support for adults: or oral al nutrition support, enter enteral al tube feeding and parenter parenteral al nutrition. 2016.
   Google Scholar
• Khin EK, Minor D, Holloway A, Pelleg A. Decisional capacity in amyotrophic lateral sclerosis. J Am Acad Psychiatry Law 2015;43:210–7.
   PubMed Web of Science ®Google Scholar
• Voltz R. Assisted nutrition: a difficult decision in patients with amyotrophic lateral sclerosis. Lancet Neurol. 2015;14:671–2.
   PubMedGoogle Scholar
• Seeber AA, Hijdra A, Vermeulen M, Willems DL. Discussions about treatment restrictions in chronic neurologic diseases: a structured review. Neurology. 2012;78:590–7.
   PubMedGoogle Scholar
• Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;4:CD001431.
   PubMed Web of Science ®Google Scholar
• Hogden A, Crook A. Patient-centered decision making in amyotrophic lateral sclerosis: where are we? Neurodegener Dis Manag. 2017; 7:377–86.
   PubMedGoogle Scholar
• Stiggelbout AM, Pieterse AH, De Haes JCJM. Shared decision making: concepts, evidence, and practice. Patient Educ Couns. 2015;98:1172–9.
   PubMed Web of Science ®Google Scholar
• Hogden A, Greenfield D, Caga J, Cai X. Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol. BMJ Open. 2016;6:e010532.
   PubMed Web of Science ®Google Scholar