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Open Access Research article

Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar

Jane Noyes1*, Rhiannon Tudor Edwards2, Richard P Hastings3, Richard Hain4, Vasiliki Totsika3, Virginia Bennett1, Lucie Hobson5, Gareth R Davies6, Ciarán Humphreys7, Mary Devins8, Llinos Haf Spencer1 and Mary Lewis9

Author Affiliations

1 School of Healthcare Sciences, Bangor University, Bangor, UK

2 Institute for Medical and Social Care Research, Bangor University, Bangor, UK

3 School of Psychology, Bangor University, Bangor, UK

4 School of Medical Sciences, Bangor University, Bangor, UK

5 National Institute for Social Care and Health Research Clinical Research Collaboration, North Wales Research Network, North Wales, UK

6 Public Health Intelligence Analyst, Public Health Wales NHS Trust, Wales, UK

7 Public Health Wales NHS Trust, Wales, UK

8 Paediatric Palliative Medicine, Our Lady’s Children’s Hospital Crumlin and The Coombe Women & Infants University Hospital, Dublin, Eire, Ireland

9 Royal United Hospital Bath NHS Trust, Bath, UK

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BMC Palliative Care 2013, 12:18  doi:10.1186/1472-684X-12-18

Published: 25 April 2013

Abstract

Background

Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar.

Methods

Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home.

Results

The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices).

Conclusions

Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings.

Keywords:
Children; Palliative care; Life-limiting illness; Evidence-based; Commissioning framework; Health economics; Cost; Health services research