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Paediatric palliative care: development and pilot study of a 'Directory' of life-limiting conditions

Richard Hain1, Mary Devins, Richard Hastings

  • 1Paediatric Palliative Medicine, Children's Hospital, Heath Park, Cardiff CF14 4XN, UK. oupc0f@bangor.ac.uk.

BMC Palliative Care
|December 17, 2013
PubMed

Insights

Developing a directory of life-limiting conditions (LLC) in children aids epidemiological studies. Most pediatric deaths result from a small number of common LLC, facilitating data analysis for better palliative care.

Area of Science:

  • Pediatric Palliative Care
  • Epidemiology
  • Medical Informatics

Background:

  • Children's palliative care service development necessitates robust epidemiological data.
  • Current definitions of pediatric palliative care populations and services lack clarity.
  • Existing definitions are based on trajectory archetypes.

Purpose of the Study:

  • To develop and pilot a directory of common diagnoses for children requiring palliative care.
  • To map specific diagnoses to established palliative care trajectory archetypes.
  • To improve the identification of children needing palliative care.

Main Methods:

  • Collected diagnoses from UK children's hospices and a specialist palliative medicine service.
  • Removed duplicates and non-life-limiting conditions based on ACT/RCPCH criteria.
  • Piloted the Directory of Life-Limiting Conditions using Welsh death certificate data (2002-2007).

Main Results:

  • Combined 1590 hospice and 105 specialist diagnoses, resulting in 376 unique diagnostic labels.
  • 54% of child deaths in Wales were attributed to life-limiting conditions (LLC).
  • A small number of LLCs account for the majority of deaths, with the top ten diagnoses causing 32% of LLC deaths.

Conclusions:

  • The Directory is a practical tool for identifying pediatric life-limiting conditions using ICD-10 codes.
  • It enables efficient data extraction and analysis from sources like death certificates.
  • Facilitates rapid and precise epidemiological studies in pediatric palliative care.
Abstract

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