title: Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care.
abstract: BACKGROUND
  Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .
  
  
  OBJECTIVE
  The aim was to examine the question: how can decision making that is both effective and patient-centred be enacted in ALS multidisciplinary care?
  
  
  METHODS
  Fifty-four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi-structured interviews. Interviews were transcribed, coded and analysed thematically.
  
  
  RESULTS
  Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision-making process; patient-centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non-specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: 'Participant Engagement'; 'Option Information'; 'Option Deliberation'; and 'Decision Implementation'.
  
  
  CONCLUSIONS
  Effective and patient-centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient-centred decision making, by incorporating patients' cyclic decision-making patterns and facilitating carer inclusion in decision processes.
  
  
  CONCLUSIONS
  The model captures the complexities of patient-centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.
authors.affiliation: Centre for Clinical Governance Research, Australian Institute of Health Innovation, University of New South Wales Sydney, Sydney, NSW, Australia.
authors.forename: Anne
authors.initials: A
authors.lastname: Hogden
authors.affiliation: Centre for Clinical Governance Research, Australian Institute of Health Innovation, University of New South Wales Sydney, Sydney, NSW, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Greenfield
authors.affiliation: Centre for Clinical Governance Research, Australian Institute of Health Innovation, University of New South Wales Sydney, Sydney, NSW, Australia.|Centre for Medical Education and Department of Family Medicine, McGill University, Montreal, QC, Canada.
authors.forename: Peter
authors.initials: P
authors.lastname: Nugus
authors.affiliation: Royal Prince Alfred Hospital, Sydney Medical School, University of Sydney, Sydney, NSW, Australia.
authors.forename: Matthew C
authors.initials: MC
authors.lastname: Kiernan
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology* / Q000628:therapy; D017028:Caregivers / Q000523:psychology*; D003657:Decision Making; D018450:Disease Progression; D005260:Female; D006282:Health Personnel; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D018802:Patient-Centered Care / Q000379:methods; D011788:Quality of Life
keywords: caregivers; motor neurone disease; patient-centred care; stakeholder perspectives