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: A total of 37,563 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, 16,642 (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. In all, 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 among those with haematology or oncology diagnoses and lowest for genitourinary and gastrointestinal diagnoses. Conclusion: Using death record data alone to identify children and young people with life-limiting condition - and therefore those who would require palliative care services - would underestimate the numbers. This underestimation varies by age, deprivation, ethnicity and diagnostic group.