Abstract
BackgroundChildren’s palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes.MethodsThe diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007.Results1590 diagnoses from children’s hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions.ConclusionThe Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care.
Highlights
We developed a Directory of life-limiting conditions by mapping the four Association for Children’s Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) archetypes onto the diagnoses of actual patients admitted to hospice or palliative care services in the UK
We describe development of the Directory and, in the light of results of the pilot study, consider some of its current limitations as well as the wider applications in taking forward service and research developments in children’s palliative care
Raw diagnostic data were collected Diagnoses were obtained from patients under the care of five children’s hospices that were using a standardised data collection tool developed by Chase Hospice (Esplen, personal communication 2010), and the Welsh specialist paediatric palliative medicine service based at the Children’s Hospital in Cardiff
Summary
The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes. The Royal College of Paediatrics and Child Health (RCPCH), working with the Association for Children’s Palliative Care (ACT) in 1997, defined the concept of life-limiting condition [6] through a series of archetype descriptions (Table 1), but did not attempt to name specific diagnoses except as exemplars. We developed a Directory of life-limiting conditions by mapping the four ACT/RCPCH archetypes onto the diagnoses of actual patients admitted to hospice or palliative care services in the UK. We describe development of the Directory and, in the light of results of the pilot study, consider some of its current limitations as well as the wider applications in taking forward service and research developments in children’s palliative care. The aim of this study was to develop and pilot a tool that can largely define the group
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