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

ABSTRACT: 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.

SUBMITTER: Jarvis S

PROVIDER: S-EPMC5788076 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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

Jarvis Stuart S Fraser Lorna K LK

Palliative medicine 20170829 2

<h4>Background</h4>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.<h4>Aim</h4>To compare routine inpatient data and death records as means of identifying life-limiting conditions in children and young people.<h4>Design</h4>Two national cohorts of children and young people with a life-limiting condition (primary cohort from England with a comparator cohort from ...[more]

PMID: 28849716

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

Publications

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

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