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Palliative care in Yorkshire, UK 1987-2008: survival and mortality in a hospice

L K Taylor1, M Miller, T Joffe

  • 1Paediatric Epidemiology Group, Division of Epidemiology and Biostatistics, Room 8.49, Worsley Building, Clarendon Way, University of Leeds, Leeds LS2 9JT, UK. l.k.fraser@leeds.ac.uk

Archives of Disease in Childhood
|November 10, 2009
PubMed

Insights

Children

Area of Science:

  • Epidemiology
  • Pediatric Palliative Care

Background:

  • Understanding the evolving profile of children and young adults requiring pediatric palliative care is crucial for service planning.
  • Previous epidemiological data on hospice care models for pediatric populations is limited.

Purpose of the Study:

  • To establish a new epidemiological evidence base on hospice care models for children and young adults.
  • To analyze demographic trends and survival patterns within a pediatric hospice cohort.

Main Methods:

  • A retrospective cohort study was conducted at Martin House Children's and Young Person's Hospice.
  • Data included all children referred between August 1987 and May 2008.
  • Demographic profiles and survival times were analyzed by diagnostic groups (Association of Children's Palliative Care - ACT categories) using Kaplan-Meier and log rank methods.

Main Results:

  • Over 20 years, 1554 children were referred; 89.5% were accepted.
  • Significant changes observed in deprivation profiles, referral sources, diagnoses (increasing non-progressive disorders - ACT category 4), and ethnicity (increasing South Asian children).
  • Overall mean survival was 5.6 years, varying significantly by diagnostic category.

Conclusions:

  • Children from higher deprivation areas are disproportionately referred for palliative care.
  • There's a notable increase in referrals of South Asian children to palliative care services in Yorkshire.
  • Pediatric hospice care encompasses a wide range of survival times, from days to over 20 years.
Abstract

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