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How many children and young people with life-limiting conditions are clinically unstable? A national data linkage
Stuart Jarvis1, Roger C Parslow2, Pat Carragher3
1Department of Health Sciences, University of York, York, UK.
Insights
Over 2200 children and young people with life-limiting conditions in Scotland experienced instability annually. Infants under one and those from South Asian, Black, or Other ethnic backgrounds faced higher risks, requiring targeted palliative care.
Area of Science:
- Paediatric Palliative Care
- Clinical Stage Assessment
- Life-Limiting Conditions (LLCs)
Background:
- Understanding the clinical trajectory of children and young people (CYP) with life-limiting conditions (LLCs) is crucial for effective care planning.
- Previous research has not comprehensively defined clinical stages for this vulnerable population in a national context.
Purpose of the Study:
- 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).
- To identify demographic and diagnostic factors associated with clinical instability in CYP with LLCs.
Main Methods:
- A national cohort study utilizing linked, routinely collected healthcare data from Scotland.
- Inclusion of 20,436 CYP with LLCs residing in Scotland between April 1, 2009, and March 31, 2014.
- Clinical stage was determined based on emergency inpatient and intensive care unit admissions, and date of death.
Main Results:
- Annually, over 2200 CYP with LLCs in Scotland were classified as unstable, deteriorating, or dying.
- Infants under one year had the highest risk of instability (OR 6.4), followed by girls (OR 1.15) and CYP of South Asian (OR 1.61), Black (OR 1.58), and Other (OR 1.33) ethnicities compared to White CYP.
- CYP with primary perinatal diagnoses had a significantly lower risk of instability (OR 0.23) compared to those with congenital abnormalities.
Conclusions:
- A substantial number of CYP with LLCs experience clinical instability, highlighting the need for specialist paediatric palliative care input.
- Infants under one year and CYP from specific ethnic minority groups (South Asian, Black, Other) are identified as priority groups for enhanced support.
- These findings can inform targeted interventions and resource allocation for paediatric palliative care services.
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.
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