Table 4.

Summary table of death certificate number and place of death, and modelling using the Lowson formula, analysis of ICD-10 and MCS with Dictionary of LLCs, and child/parent and professional care preferences

Epidemiological exemplar for North Wales: children’s palliative care
Data type	Comments	Year
		2000/1	2002/3	2003/4	2004/5	2005/6	2006/7	2007/8	2008/9	2009/10
Population Estimates North Wales 0 -19 years1		162,100	162,100	162,100	162,100	161,300	160,000	159,200	158,000	156,600
Death certificate analysis 1month – 19 years	Actual deaths per year		Average deaths 25 per year from a life-limiting condition
Death certificate analysis 1month –19 years Place of death	Actual place of death over 5 years		61% died in North Wales
			38% North Wales Hospital
			23% Home
			32% Hospital/Hospice in England2
Lowson et al. model 1 month – 19 years	Estimated deaths per year based on meta-analysis epidemiological evidence/deaths.		Mean population 2002/3- 2007/8
			161,113 161,113/10,000 (16.09) x 15 = 242 children/10 = 24 deaths per year
Prevalence Dictionary/ICD-10-HES Prevalence of children with LLC in annual contact with hospital as in-patient	Minimum demand by children with LLCs for in-patient services	Overall prevalence 25 per 10,000		30/10,000 Age 3		30/10,000 Age 5		22/10,000 Age 7		Overall prevalence 32 per 10,000
		162,100/10,000 x25 = 405 children								156,600/10,000 x 32 = 501 children
Prevalence Dictionary/ICD-10-MCS Prevalence of children with LLC in general population	Maximum number of children who could potentially be affected by a LLC			Overall prevalence of LLC at 3,5 and 7 years 145/10,000						156,600/10,000 x 145 2270.7 children
				1.89% 189/10,000 Age 3		1.5% 145/10,000 Age 5		1.5% 145/10,000 Age 7
Parent/child choices interviews									Choice of end-of-life care at home
Professional perspectives Interviews/questionnaire									Community nursing services too stretched to provide choice

Key ¹[29]^2. Nearest tertiary children’s hospitals are in England. LLC Life-limiting condition.