title: What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives.
abstract: BACKGROUND
  Patients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients' ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS.
  
  
  METHODS
  An exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes.
  
  
  RESULTS
  Decision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients' reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients' personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs.
  
  
  CONCLUSIONS
  Decision-making for symptom management and quality of life in ALS care is enhanced when the patient's personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.
authors.affiliation: Centre for Clinical Governance Research, Australian Institute of Health Innovation, University of New South Wales, New South Wales, Australia.
authors.forename: Anne
authors.initials: A
authors.lastname: Hogden
authors.forename: David
authors.initials: D
authors.lastname: Greenfield
authors.forename: Peter
authors.initials: P
authors.lastname: Nugus
authors.forename: Matthew C
authors.initials: MC
authors.lastname: Kiernan