Comparing routine inpatient data and death records as a means of identifying children and young people with life limiting conditions

Background Recent estimates of the number of children and young people with life limiting conditions derived from routine inpatient data are higher than earlier estimates using death record data. Aim To compare routine inpatient data and death records as means of identifying life limiting conditions in children and young people. Design Two national cohorts of children and young people with a life limiting condition (primary cohort from England with a comparator cohort from Scotland) were identified using linked routinely collected healthcare and administrative data. Participants 37563 children and young people with a life limiting condition in England who died between 1 April 2001 and 30 March 2015 and 2249 children and young people with a life limiting condition in Scotland who died between 1 April 2003 and 30 March 2014. Results In England, 16642 (57%) non-neonatal cohort members had a life limiting condition recorded as the underlying cause of death; 3364 (12%) had a life limiting condition -related condition recorded as the underlying cause and 3435 (12%) had life limiting conditions recorded only among contributing causes. 5651 (19%) non-neonates and 3443 (41%) neonates had no indication of a life limiting condition recorded in their death records. Similar results were seen in Scotland (overall, 16% had no indication of life limiting conditions). In both cohorts, the recording of life limiting condition was highest amongst those with haematology or oncology diagnoses and lowest for genitourinary and gastrointestinal diagnoses.