Dataset Information

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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Publications

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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Dataset Information

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

Background

Aim

Design

Participants

Results

Conclusion

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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