title: Variations in specialist palliative care referrals: findings from a population-based patient cohort of acute myeloid leukaemia, diffuse large B-cell lymphoma and myeloma.
abstract: OBJECTIVE
  To develop and implement a methodology for capturing complete haematological malignancy pathway data and use it to identify variations in specialist palliative care (SPC) referrals.
  
  
  METHODS
  In our established UK population-based patient cohort, 323 patients were diagnosed with acute myeloid leukaemia, diffuse large B-cell lymphoma or myeloma between May 2005 and April 2008, and died before April 2010. A day-by-day calendar approach was devised to collect pathway data, including SPC referrals, to supplement routinely collected information on clinical presentation, diagnosis, treatment, response, and date and place of death.
  
  
  RESULTS
  155 (47.9%) of the 323 patients had at least one SPC referral. The likelihood of referral increased with survival (OR 6.58, 95% CIs 3.32 to 13.03 for patients surviving ≥1 year compared to ≤1 month from diagnosis), and varied with diagnosis (OR 1.96, CIs 1.15 to 3.35 for myeloma compared to acute myeloid leukaemia). Compared to patients dying in hospital, those who died at home or in a hospice were also more likely to have had an SPC referral (OR 3.07, CIs 1.59 to 5.93 and 4.74, CIs 1.51 to 14.81, respectively). No associations were found for age and sex.
  
  
  CONCLUSIONS
  Our novel approach efficiently captured pathway data and SPC referrals, revealing evidence of greater integration between haematology and SPC services than previously reported. The likelihood of referral was much higher among those dying outside hospital, and variations in practice were observed by diagnosis, emphasising the importance of examining diseases individually.
authors.affiliation: Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, North Yorkshire, UK.
authors.forename: D A
authors.initials: DA
authors.lastname: Howell
authors.affiliation: Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, North Yorkshire, UK.
authors.forename: H-I
authors.initials: HI
authors.lastname: Wang
authors.affiliation: Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, North Yorkshire, UK.
authors.forename: E
authors.initials: E
authors.lastname: Roman
authors.affiliation: Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, North Yorkshire, UK.
authors.forename: A G
authors.initials: AG
authors.lastname: Smith
authors.affiliation: Queens Centre for Oncology, Castle Hill Hospital, Hull, East Yorkshire, UK.
authors.forename: R
authors.initials: R
authors.lastname: Patmore
authors.affiliation: Hull York Medical School, The University of Hull, Hull, East Yorkshire, UK.
authors.forename: M J
authors.initials: MJ
authors.lastname: Johnson
authors.affiliation: York Teaching Hospital NHS Foundation Trust, York, North Yorkshire, UK.
authors.forename: A C
authors.initials: AC
authors.lastname: Garry
authors.affiliation: York Teaching Hospital NHS Foundation Trust, York, North Yorkshire, UK.
authors.forename: M R
authors.initials: MR
authors.lastname: Howard
mesh_terms: D000368:Aged; D019091:Critical Pathways / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D015470:Leukemia, Myeloid, Acute / Q000401:mortality / Q000628:therapy*; D016403:Lymphoma, Large B-Cell, Diffuse / Q000401:mortality / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D009101:Multiple Myeloma / Q000401:mortality / Q000628:therapy*; D010166:Palliative Care / Q000379:methods / Q000706:statistics & numerical data*; D012017:Referral and Consultation / Q000706:statistics & numerical data*; D012189:Retrospective Studies; D013038:Specialization; D016019:Survival Analysis