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Table 1 Key inputs in the model

From: The burden of congenital hyperinsulinism in the United Kingdom: a cost of illness study

Input Value Reference
Population inputs
 Prevalence of CHIb 0.003% Estimated scope of the national CHI service (NHS England CHI Service Standard Contract, 2013) [4]
 Number of newly diagnosed patients with CHI per yeara,b 95 Expert opinion (GOSH, 2015; NORCHI, 2016) [19, 30]
 Maximum age of patients that have received a near-total pancreatectomyb 54 Harold N. Lovvorn III, 1999 [23]
Cost inputs per patient
 Daily cost of inpatient care at local hospital (excess)a £486.62 NHS Reference Costs (2015–16) [20]
 Daily cost of inpatient care at specialist centre (excess)a £486.62 NHS Reference Costs (2015–16) [20]
 Daily cost of neonatal care (excess)a £274.11 NHS Reference Costs (2015–16) [20]
 Cost of inpatient care, per non-elective long stay at local hospitala £2186.61 NHS Reference Costs (2015–16) [20]
 Annual cost of paediatric outpatient diabetes careb £2925.00 NHS National Tariff (2014–15) [31]
 Total annual cost of IDDM for patients managed by multiple daily insulin injections (including severe and non-severe events)b £2183.00 Evans, 2015 (2013)* [32]
 Cost of insertion of central venous catheter (Hickman line)a £5925.98 NHS Reference Costs (2015–16) [20]
Clinical inputs
 Proportion of CHI patients responsive to first line therapy at local hospitala,b 75% Expert opinion (NORCHI, 2016) [13]
 Proportion of IDDM patients managed by multiple daily injectionsb 90% Expert opinion (GOSH and NORCHI, 2016) [13, 19]
 Incidence of IDDM at 11 years post near-total pancreatectomyb 96% Arya, 2014 [15]
 Proportion of CHI patients with diffuse disease responsive to octreotideb 30% Expert opinion (NORCHI, 2016) [13]
 Number of days until discharge from hospital following successful first-line therapya,b 14 Expert opinion (GOSH and NORCHI, 2016) [13, 19]
 Number of days to assess response to medical treatment in neonatal carea 10 Expert opinion (GOSH, 2016) [19]
 Number of days from octreotide non-response until surgerya 21 Expert opinion (NORCHI), 2016 [30]
  1. *Cost inflated to 2015/2016 cost year using the Personal Social Services Research Unit’s (PSSRU) hospital and community health services (HCHS) index [33]
  2. Key inputs shown include the ten greatest cost drivers of first year costsa and the ten greatest cost drivers of total annual costsb as identified by the DSA