Rising prevalence of paediatric home parenteral nutrition (HPN) within a Scottish nationwide register with complete ascertainment

The four centres with the facilities and expertise to give prolonged PN beyond term and provide paediatric ( < 16 years of age) HPN are formalised within the Scottish HPN MCN. Scotland comprises 8.6 % of the UK paediatric population. We aimed to demonstrate incidence and prevalence of the need for paediatric HPN in Scotland, as a representative part of the UK. The prospective cohort of paediatric HPN cases in Scotland has been ongoing from 01/2003. We reviewed prevalence and incidence for each year from 2003 to 2010, (including point prevalence on each 31st of October). Outcomes included fate ‐ namely continuing HPN, leaving paediatric network, and reason why. Population data for Scotland from the General Register Office (http://www.groscotland.gov. uk) provided population numbers (and estimates where needed) for Scots aged < 16 years, results were standardised to the 2001 census, and trend analysis performed for the 2 epochs 2003‐06 and 2007‐10. There were 40 HPN cases (42 episodes), with 6 prevalent cases on 01.01.03, 34 incident HPN cases (36 HPN episodes), and 30 cases stopped HPN ‐ see table for incidence and prevalence. 20 patients (22 episodes HPN) had short bowel syndrome, 10: neuromyopathic gut disease, 8: mucosal gut disease, 2: other. Outcomes; 14 adapted, 1 transitioned, 1 left Scotland, and 10 died. 8 year survival was 75 %. Standardised (95 % CI) period prevalence rates rose from 1.06 (0.51‐1.95) in 2003 to 1.76 (1.01‐2.86) in 2010, with a significant increase from 2003‐2006 to 2007‐2010 (P = 0.003). Rises in standardised point prevalence and incidence were not significant.