Objective To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care.
Design National cohort of PICU admissions linked to Office of National Statistics death certificate data.
Setting 31 PICUs in Great Britain.
Participants A cohort of 35 383 children admitted to PICUs between 1 November 2002 until 25 January 2007.
Main Outcome Measures Place of death by palliative care discharge status.
Results 2346 (6.6%) deaths occurred after discharge during the study period, which is more than 10 times the normal child population mortality of 6.0 per 1000. Discharge to palliative care resulted in fewer deaths in hospital (44.1%) (compared to non-palliative care discharges (77.7%)), a greater proportion of deaths were at home (33.3% compared to non-palliative discharges 16.1%) and in a hospice (22.5% compared to non-palliative discharges 5.8%).
Conclusions Children referred to palliative care services at discharge from PICU are more likely to die in the community (home or hospice) than children not referred to palliative care.
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Participators Addenbrooke's NHS Trust: Addenbrooke's Hospital; Bart's and the London NHS Trust: Bart's and The Royal London; Birmingham Children's Hospital NHS Trust: Diana, Princess of Wales Children's Hospital; Brighton & Sussex University Hospitals NHS Trust: Royal Alexandra Hospital for Sick Children; Cardiff & Vale NHS Trust: University Hospital of Wales; Central Manchester & Manchester Children's University Hospitals NHS Trust: Royal Manchester Children's Hospital; Great Ormond Street Hospital for Children NHS Trust: Great Ormond Street Hospital for Sick Children; Guy's & St Thomas' Hospital NHS Trust: Guy's Hospital; Hull & East Yorkshire Hospitals NHS Trust: Hull Royal Infirmary; King's College Hospital NHS Trust: King's College Hospital; Leeds Teaching Hospitals NHS Trust: Leeds General Infirmary, St James University Hospital; Newcastle upon Tyne Hospitals NHS Trust: Newcastle General Hospital, Freeman Hospital, Royal Victoria Infirmary; Oxford Radcliffe Hospitals NHS Trust: John Radcliffe Hospital; Queen's Medical Centre Nottingham University NHS Trust: Queen's Medical Centre; Royal Brompton & Harefield NHS Trust: Royal Brompton Hospital; Royal Liverpool Children's NHS Trust: Alder Hey Hospital; Royal Group of Hospitals and Dental Hospital HSS Trust, Belfast Hospital for Sick Children; Sheffield Children's NHS Trust: Sheffield Children's Hospital; Southampton University Hospitals NHS: Trust Southampton General Hospital; South Tees Hospitals NHS Trust: James Cook University Hospital; St George's Healthcare NHS Trust: St George's Hospital; St Mary's NHS Trust: St Mary's Hospital; The Lewisham Hospitals NHS Trust: University Hospital, Lewisham; University Hospitals Bristol NHS Foundation Trust: Bristol Royal Hospital for Children; University Hospitals of Leicester NHS Trust: Leicester Glenfield Hospital, Leicester Royal Infirmary; University Hospital of North Staffordshire NHS Trust: Stoke on Trent City General.
Steering Group members Mrs Pamela Barnes, Professor Nick Black (Chair) (2002–2007), Mr William Booth, Ms Bev Botting Child (2002–2003), Dr Jean Chapple (2002–2006), Dr Bill Chaudhry (2002–2003), Dr Anthony Chisakuta, Dr Mark Darowski, Mr Noel Durkin, Dr Ian Jenkins, Dr Steve Kerr, Ms Helen Laing (2004–2006) & (present), Mr Ian Langfield (2002–2003), Lucy Lloyd Scott, Dr Michael Marsh, Dr Jillian McFadzean, Dr Roddy McFaul (2002–2003), Dr Kevin Morris, Professor Jon Nicholl (2002–2006), Dr Roddy O'Donnell, Dr Gale Pearson, Dr Mark Peters, Ms Tanya Ralph (2002–2006), Ms Laura Reekie, Dr Kathy Rowan, Mr Stuart Rowe, Ms Dominique Sammut, Dr Jenifer Smith, Dr Charles Stack (2002–2006), Professor Stuart Tanner (2003–2006), Dr Robert Tasker (2004–2008), Dr Edward Wozniak.
Clinical Advisory Group members Dr Paul Baines (2002–2008), Ms Corenna Bowers (2002–2004), Faith Chinanga, Kathryn Claydon-Smith, Dr Gillian Colville, Dr Anthony Chisakuta, Dr Peter Davis, Dr Andrew Durward, Ms Georgina Gymer (2005–2006), Dr James Fraser (2002–2005), Dr Hilary Klonin, Ms Helen Laing, Ms Christine Mackerness, Tina McClelland, Dr Jillian McFadzean, Ms Victoria McLaughlin, (2002–2007), Elizabeth McKinty, Dr Roddy O'Donnell, Ms Geralyn Oldham, Dr Gale Pearson (Chair), Dr Damian Pryor (2002–2004), Chloe Rishton, Dr Allan Wardhaugh, Ms Debbie White.
Funding PICANet is funded by the National Clinical Audit and Patient Outcomes Programme via the Healthcare Quality Improvement Partnership (HQIP), Health Commission Wales Specialised Services, NHS Lothian/National Service Division NHS Scotland, the Royal Belfast Hospital for Sick Children and the Pan Thames PICU Commissioning Consortium.
Competing interests None.
Ethical approval Collection of personally identifiable data has been approved by the National Information Governance Board (Formerly the Patient Information Advisory Group) http//www.nigb.nhs.uk/ecc/reg/regoutput.xls and ethical approval granted by the Trent Medical Research Ethics Committee, ref. 05/MRE04/17.
Provenance and peer review Not commissioned, externally peer reviewed.