Children with a Life-Limiting or Life-Threatening Condition in Wales
Bibliographic record
Abstract
Children and Young people with life-limiting and life-threatening conditions may benefit from input from Paediatric Palliative Care services. Effective healthcare planning, service development and delivery relies upon an accurate understanding of the population who would benefit from that care. Although recent studies in England and Scotland have shown an increasing prevalence of children and young people with life-limiting conditions, data in Wales has not been updated since 2009. The aim of this report was to summarise the key findings on the population of children and young people in Wales with a life-limiting or life-threatening condition. This included identifying the numbers of children, prevalence by age, deprivation and health board and complexity of needs of this population of children and young people. An analysis of routinely collected linked primary and secondary healthcare data was undertaken to provide this information. The following were the key findings: 1. The population of children and young people with life-limiting conditions increased by almost a quarter in the decade from 2009-2019 2. There are geographical disparities in prevalence of life-limiting conditions between health boards and more children and young people living in areas of higher deprivation than expected 3. Congenital conditions have the highest prevalence, but there are marked increases in prevalence in most diagnostic groups 4. Children and young people with life-limiting conditions are disproportionately high users of healthcare 5. There is a range of medical complexity across conditions and increasing complexity with increasing age 6. Approximately a third of children and young people with life-limiting conditions in Wales experience clinical instability each year 7. Medical complexity and stage of condition are related, but complexity provides additional information on needs 8. More than half of children who die in Wales have an underlying life-limiting condition
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".