title: Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease.
abstract: OBJECTIVE
  This study aimed to explore the decision-making process leading up to gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease patients with dysphagia. However, there is no robust evidence to suggest the optimal timing for gastrostomy insertion.
  
  
  METHODS
  Retrospective qualitative exploration using semistructured interviews with paired patients and carers in order to elicit their perceptions in relation to gastrostomy timing.
  
  
  RESULTS
  27 patients consented to the study; of these, 23 underwent a successful gastrostomy. Approximately 3 months following a successful gastrostomy, 10 patients and 8 carers were interviewed. Decision-making in relation to the timing of gastrostomy was described as being a difficult process with individual variations and wishes. A range of factors acted as triggers for taking the decision to proceed with gastrostomy such as prolonged, tiring and effortful meals; the task of food preparation; choking and aspiration; and weight loss. Factors such as the reluctance to give up oral feeding, not realising the potential benefits and negative perceptions of gastrostomy influenced a decision to delay the procedure. A tendency for late insertion was identified despite the opposite advice by health professionals.
  
  
  CONCLUSIONS
  The advice for early insertion does not outweigh the personal perceptions and psychosocial factors for patients and their carers. Understanding the factors which influence decision-making on an individual basis is important for information and care provision by healthcare professionals in aiding patients, and their carers, to make informed decisions in relation to gastrostomy timing.
authors.affiliation: Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield, Sheffield, UK.
authors.forename: Theocharis
authors.initials: T
authors.lastname: Stavroulakis
authors.forename: Wendy O
authors.initials: WO
authors.lastname: Baird
authors.forename: Susan K
authors.initials: SK
authors.lastname: Baxter
authors.forename: Theresa
authors.initials: T
authors.lastname: Walsh
authors.forename: Pamela J
authors.initials: PJ
authors.lastname: Shaw
authors.forename: Christopher J
authors.initials: CJ
authors.lastname: McDermott
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D017028:Caregivers; D003657:Decision Making; D003680:Deglutition Disorders / Q000209:etiology / Q000523:psychology / Q000601:surgery*; D004750:Enteral Nutrition / Q000379:methods / Q000523:psychology; D005260:Female; D005774:Gastrostomy / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic / Q000379:methods; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000150:complications* / Q000523:psychology*; D010166:Palliative Care / Q000379:methods / Q000523:psychology; D036301:Qualitative Research; D012189:Retrospective Studies; D013995:Time; D006113:United Kingdom
keywords: Amyotrophic Lateral Sclerosis; Gastrostomy; Motor Neurone Disease; Neurological conditions