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How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study
  1. Stuart Jarvis1,
  2. Roger C Parslow2,
  3. Pat Carragher3,
  4. Bryony Beresford4,
  5. Lorna K Fraser1
  1. 1Department of Health Sciences, University of York, York, UK
  2. 2Division of Epidemiology and Biostatistics, University of Leeds, Leeds, UK
  3. 3Children's Hospice Association Scotland, Edinburgh, UK
  4. 4Social Policy Research Unit, University of York, York, UK
  1. Correspondence to Dr Lorna K Fraser, Department of Health Sciences, University of York, Area 2, Seebohm Rowntree Building, Heslington, York YO10 5DD, UK; lorna.fraser{at}


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.

  • Palliative Care
  • PICANet
  • Routine data
  • End-of-life care
  • Life-limiting conditions

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  • Twitter Follow Stuart Jarvis at @swjarvis and Lorna Fraser at @lornafraser10

  • Contributors SJ contributed to the design of the study, carried out the analysis, contributed to the interpretation of data and wrote the first draft of the manuscript. RCP made substantial contributions to the conception/design of the work, to interpretation and to revision of the manuscript. PC, BB made substantial contributions to the conception/design of the work, interpretation of the work and to revision of the manuscript. LKF conceived and designed the work and took part in the analysis and played a major role in interpretation of data. She also contributed to drafting and revision of the manuscript. All authors have approved the manuscript prior to submissions and agree to be accountable for all aspects of the work.

  • Funding This study forms part of the ChiSP project, funded by the Managed Service Network for Children and Young People with Cancer (MSNCYPC) through Children's Hospice Association Scotland.

  • Competing interests PC is employed by the funder, Children's Hospice Association Scotland.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No data are available—the data are potentially sensitive and were accessed within the NSS eDRIS safe haven with only aggregated results disclosed after undergoing disclosure control.