Palliative care in children in Wales: a study of provision and need

Area of Science:

• Paediatric Palliative Care
• Epidemiology
• Healthcare Services Research

Background:

• Accurate data on the prevalence of children requiring palliative care is essential for service planning and resource allocation.
• Previous estimates for paediatric palliative care prevalence may not reflect current needs.
• Understanding the recognition and service utilization for children needing palliative care is crucial.

Purpose of the Study:

• To determine the incidence and prevalence of children requiring specialist paediatric palliative care in Wales.
• To identify the primary sources of identification for children needing palliative care.
• To compare current prevalence estimates with historical data.

Main Methods:

• Children were identified through multiple sources: paediatricians via the Welsh Paediatric Surveillance Unit (WPSU), referrals to specialist palliative medicine services, and children under the care of children's hospices.
• Data collection encompassed all children referred or reported between January 2001 and December 2002.
• Prevalence was calculated based on the identified child population within Wales.

Main Results:

• A total of 226 children were identified, with varying contributions from each identification source.
• The study estimated a prevalence of approximately 3.75 per 10,000 children requiring palliative care.
• This prevalence is approximately half of the figures reported in a 1997 document (ACT/RCPCH).

Conclusions:

• The study suggests that the prevalence of paediatric palliative care needs may be underestimated.
• Children requiring palliative medicine services appear to be under-recognized within Wales.
• There is a limited overlap between children's hospice care and specialist paediatric palliative medicine services.