title: Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial.
abstract: OBJECTIVE
  To explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals.
  
  
  METHODS
  Qualitative interview and focus group study.
  
  
  METHODS
  Community and hospital-based focus groups and interviews.
  
  
  METHODS
  Stable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11).
  
  
  RESULTS
  PC highlighted fragmentation of services and difficulty in accessing specialist care as key barriers to good care. They felt that time for discussion with HCP was inadequate within current National Health Service (NHS) healthcare systems. HCP highlighted uncertainty of prognosis, explaining mortality risk to patients and switching from curative to palliative approaches as key challenges. Patient selection, nature of the intervention and relevance of trial outcomes were identified by HCP as key challenges in the design of a clinical trial.
  
  
  CONCLUSIONS
  PC and HCP expressed a number of concerns relevant to the nature and content of an end-of-life intervention for patients with advanced heart disease. The findings of this study are being used to support a phase II randomised clinical trial of Future Care Planning in advanced heart disease.
authors.affiliation: Department of cardiology, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Martin A
authors.initials: MA
authors.lastname: Denvir
authors.affiliation: Department of Palliative Care, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Gill
authors.initials: G
authors.lastname: Highet
authors.affiliation: Department of cardiology, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Shirley
authors.initials: S
authors.lastname: Robertson
authors.affiliation: Department of cardiology, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Cudmore
authors.affiliation: Department of cardiology, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Janet
authors.initials: J
authors.lastname: Reid
authors.affiliation: Department of cardiology, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Andrea
authors.initials: A
authors.lastname: Ness
authors.affiliation: Cardiology Department, Glasgow Royal Infirmary, Glasgow, UK.
authors.forename: Karen
authors.initials: K
authors.lastname: Hogg
authors.affiliation: Edinburgh Health Services Research Unit, Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors.forename: Christopher
authors.initials: C
authors.lastname: Weir
authors.affiliation: Primary Palliative Care Research Group, Community Health Sciences-General Practice, University of Edinburgh, Edinburgh, UK.
authors.forename: Scott
authors.initials: S
authors.lastname: Murray
authors.affiliation: Department of Palliative Care, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Kirsty
authors.initials: K
authors.lastname: Boyd
mesh_terms: D017028:Caregivers; D017144:Focus Groups; D006282:Health Personnel; D006331:Heart Diseases / Q000628:therapy; D006801:Humans; D007407:Interviews as Topic; D008137:Longitudinal Studies; D010347:Patient Care Planning; D010361:Patients; D016032:Randomized Controlled Trials as Topic / Q000379:methods* / Q000592:standards*; D012720:Severity of Illness Index; D013727:Terminal Care