Jarvis, S, Parslow, RC orcid.org/0000-0002-3945-5294, Carragher, P et al. (2 more authors) (2017) How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study. Archives of Disease in Childhood, 102 (2). pp. 131-138. ISSN 0003-9888
Abstract
Objective: To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0-25 years in Scotland with lifelimiting 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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is an author produced version of a paper published in Archives of Disease in Childhood. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | End-of-life care; Life-limiting conditions; PICANet; Palliative Care; Routine data |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Genetics, Health and Therapeutics (LIGHT) > Division of Epidemiology & Biostatistics (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 25 Nov 2016 11:50 |
Last Modified: | 12 Apr 2017 12:23 |
Published Version: | https://doi.org/10.1136/archdischild-2016-310800 |
Status: | Published |
Publisher: | BMJ Publishing Group |
Identification Number: | 10.1136/archdischild-2016-310800 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:108394 |