title: Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers.
abstract: BACKGROUND
  Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients' and caregivers' efforts to communicate about these issues with their healthcare team.
  
  
  METHODS
  This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12 months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL-an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5 years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients' and caregivers' participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators.
  
  
  BACKGROUND
  Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations.
  
  
  BACKGROUND
  Australian New Zealand Clinical Trials Registry ACTRN12610000724077.
authors: Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, New South Wales, Australia.
authors: Adam
authors: A
authors: Walczak
authors: Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, New South Wales, Australia.
authors: Phyllis N
authors: PN
authors: Butow
authors: Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, New South Wales, Australia HammondCare Palliative and Supportive Care Service, Greenwich Hospital, Greenwich, New South Wales, Australia.
authors: Josephine M
authors: JM
authors: Clayton
authors: Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, New South Wales, Australia.
authors: Martin H N
authors: MH
authors: Tattersall
authors: Cardiovascular and Chronic Care Centre, Curtin University of Technology, Sydney, New South Wales, Australia.
authors: Patricia M
authors: PM
authors: Davidson
authors: School of Public Health, University of Sydney, Sydney, New South Wales, Australia.
authors: Jane
authors: J
authors: Young
authors: Department of Family Medicine, University of Rochester Medical Centre, Rochester, New York, USA.
authors: Ronald M
authors: RM
authors: Epstein
mesh_terms: D017028:Caregivers; D003142:Communication; D006801:Humans; D009369:Neoplasms / Q000451:nursing*; D010361:Patients; D011379:Prognosis; D012107:Research Design; D013727:Terminal Care
keywords: Advance care planning; Cancer; Caregivers; Communication; End-of-life care; Question prompt list