title: Advance care planning in motor neuron disease: A systematic review.
abstract: Motor neuron disease (MND) is an incurable progressive illness, characterized by incessant deterioration of neuromuscular function. Timely commencement of advance care planning (ACP) may enable patients to participate in future care choices. The present systematic review aimed to summarize what is known about the prevalence, content, patient/caregiver benefits, healthcare professional (HCP) awareness/support, and healthcare outcomes associated with ACP in the MND setting.
  
  
  
  Quantitative and qualitative studies were identified through database searches and eligibility assessed by one author and verified by her coauthor. Data extraction and quality assessments against standardized criteria were completed by the two authors.
  
  
  
  Of the 422 studies identified, 16 were included. The research methods generally lacked rigor. Advance directive (AD) prevalence varied considerably across studies. Disease progression was the strongest predictor of AD completion. ACP processes may clarify patients' wishes and promote communication. HCP attitudes or lack of awareness may limit ACP processes. Varying patient preferences may make flexible approaches and timing necessary.
  
  
  
  Important benefits may be associated with ACP in the context of a motor neuron disease (e.g., feelings of control/relief and refusal of unwanted treatments). However, further evidence is required to verify findings and identify optimal streamlined approaches (e.g., use of decision aids) consistent with patients' (and caregivers') needs over time.
authors.affiliation: University of Sydney,School of Psychology,Sydney,New South Wales,Australia.
authors.forename: Leigh
authors.initials: L
authors.lastname: Murray
authors.affiliation: University of Sydney,Psycho-Oncology Co-operative Research Group,Sydney,New South Wales,Australia.
authors.forename: Phyllis N
authors.initials: PN
authors.lastname: Butow
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000458:organization & administration*; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease; D010358:Patient Participation / Q000523:psychology*; D036301:Qualitative Research; D013727:Terminal Care / Q000458:organization & administration*
keywords: Advance care planning; Amyotrophic lateral sclerosis; Motor neuron disease; Systematic review