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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

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

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