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Variations in specialist palliative care referrals: findings from a population-based patient cohort of acute myeloid leukaemia, diffuse large B-cell lymphoma and myeloma
  1. D A Howell1,
  2. H-I Wang1,
  3. E Roman1,
  4. A G Smith1,
  5. R Patmore2,
  6. M J Johnson3,
  7. A C Garry4 and
  8. M R Howard4
  1. 1Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, North Yorkshire, UK
  2. 2Queens Centre for Oncology, Castle Hill Hospital, Hull, East Yorkshire, UK
  3. 3Hull York Medical School, The University of Hull, Hull, East Yorkshire, UK
  4. 4York Teaching Hospital NHS Foundation Trust, York, North Yorkshire, UK
  1. Correspondence to Dr D A Howell, Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, North Yorkshire YO10 5DD, UK; debra.howell{at}


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.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:

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