How Many Children And Young People With Life-limiting Conditions Are Clinically Unstable? A National Data Linkage Study

Title

How Many Children And Young People With Life-limiting Conditions Are Clinically Unstable? A National Data Linkage Study

Creator

Stuart Jarvis; Roger C Parslow; Pat Carragher; Bryony Beresford; Lorna K Fraser

Identifier

http://dx.doi.org/10.1136/archdischild-2016-310800

Publisher

Archives Of Disease In Childhood

Date

2016

Subject

Patterns; Prevalence; Palliative Care; Pediatrics; Australian Casemix Classification; England; Health Service; Ethnicity; Care And Treatment; Patient Outcomes; Scotland; Diseases; Management; Intensive Care Units; Registration; Age; Consortia; Diseases; Minority & Ethnic Groups; Hospice Care; Ethnicity; Quality; Medical Research; Patient Admissions; Studies; Councils; College Admissions; Audits; Datasets; Palliative Care; Hospitals
End-of-life Care; Life-limiting Conditions; Picanet; Palliative Care; Routine data

Description

Objective To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0–25 years in Scotland with life-limiting conditions (LLCs).

Design National cohort of CYP with LLCs using linked routinely collected healthcare data.

Setting Scotland.

Patients 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014.

Main outcome Clinical stage based on emergency inpatient and intensive care unit admissions and date of death.

Results Over 2200 CYP with LLCs in Scotland were unstable, deteriorating or dying in each year. Compared with 1-year-olds to 5-year-olds, children under 1 year of age had the highest risk of instability (OR 6.4, 95% CI 5.7 to 7.1); all older age groups had lower risk. Girls were more likely to be unstable than boys (OR 1.15, 95% CI 1.06 to 1.24). CYP of South Asian (OR 1.61, 95% CI 1.28 to 2.01), Black (OR 1.58, 95% CI 1.04 to 2.41) and Other (OR 1.33, 95% CI 1.02 to 1.74) ethnicity were more likely to experience instability than White CYP. Deprivation was not a significant predictor of instability. Compared with congenital abnormalities, CYP with most other primary diagnoses had a higher risk of instability; only CYP with a primary perinatal diagnosis had significantly lower risk (OR 0.23, 95% CI 0.19 to 0.29).

Conclusions The large number of CYP with LLCs who are unstable, deteriorating or dying may benefit from input from specialist paediatric palliative care. The age group under 1 and CYP of South Asian, Black and Other ethnicities should be priority groups.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

September 2016 List

Citation

Stuart Jarvis; Roger C Parslow; Pat Carragher; Bryony Beresford; Lorna K Fraser, “How Many Children And Young People With Life-limiting Conditions Are Clinically Unstable? A National Data Linkage Study,” Pediatric Palliative Care Library, accessed December 6, 2021, https://pedpalascnetlibrary.omeka.net/items/show/10675.

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