How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study.
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).


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


METHODS
Scotland.


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


RESULTS
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.
Department of Health Sciences, University of York, York, UK.
Stuart
S
Jarvis
Division of Epidemiology and Biostatistics, University of Leeds, Leeds, UK.
Roger C
RC
Parslow
Children's Hospice Association Scotland, Edinburgh, UK.
Pat
P
Carragher
Social Policy Research Unit, University of York, York, UK.
Bryony
B
Beresford
Department of Health Sciences, University of York, York, UK.
Lorna K
LK
Fraser
D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D002648:Child; D002675:Child, Preschool; D059019:Clinical Coding; D015331:Cohort Studies; D003422:Critical Care / Q000706:statistics & numerical data; D016638:Critical Illness / Q000453:epidemiology*; D018450:Disease Progression; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D016247:Information Storage and Retrieval; D008297:Male; D010166:Palliative Care / Q000706:statistics & numerical data; D012606:Scotland / Q000453:epidemiology; D017678:Sex Distribution; D055815:Young Adult
End-of-life care; Life-limiting conditions; PICANet; Palliative Care; Routine data