Observational studyPalliative medicine2021
Estimating the current and future prevalence of life-limiting conditions in children in England.
Observational study in Palliative medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07102433 (CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions), which is not on this map. Cited by 112 papers, 6 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions: Establishing a Multisectoral Collaboration and Conceptual Framework to Advance Evidence and Practice.
Who cites it
112 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review.BMC palliative care · 2025Pooled it
- Patient and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Integrated care for children and young people with special health and care needs: a systematic review.Archives of disease in childhood · 2024Pooled it
- Experiences of music therapy in paediatric palliative care from multiple stakeholder perspectives: A systematic review and qualitative evidence synthesis.Palliative medicine · 2024Pooled it
- Hospital-to-home transitions for children with medical complexity: part 1, a systematic review of reported outcomes.European journal of pediatrics · 2023Pooled it
- Factors affecting decision-making in children with complex care needs: a consensus approach to develop best practice in a UK children's hospital.BMJ paediatrics open · 2022Guideline
- Carer preferences of route of administration of transmucosal diamorphine and willingness to take part in a randomised controlled trial: an interview study (DIPPER).BMC palliative care · 2022Trial
- Caregiver Preferences for AI-Supported Telemedicine in Pediatric Palliative Care: A Discrete Choice Experiment.Journal of palliative care · 2026Article
- Trend analysis and Bayesian projection of childhood life-limiting conditions in Korea: insights into incidence and mortality.BMJ paediatrics open · 2026Observational
- Survival in children and adolescents with life-limiting conditions-a nationwide cohort study.European journal of epidemiology · 2026Article
- Increasing complexity in children with life-limiting conditions in England: an analysis of national routine data.Archives of disease in childhood · 2026Article
- Communication, everyday life and technology from the perspectives of children with life-limiting or life-threatening conditions: a qualitative study.BMJ paediatrics open · 2026Article
- Article
- Nurses' Experiences with Spiritual Care in Paediatric Palliative Care: A Systematic Review.Healthcare (Basel, Switzerland) · 2026Review
- Chronic complex conditions and functional limitations among Métis children in Alberta, Canada: a retrospective cohort study.Paediatrics & child health · 2026Article
- Identification and characteristics of children with complex chronic diseases in the paediatric ward of a tertiary hospital: a prospective study.European journal of pediatrics · 2026Article
- Epilepsy in Paediatric Palliative Care: Prevalence, Clinical Correlations and the Development of a Consensus-Based Seizure Management Protocol.Medicina (Kaunas, Lithuania) · 2026Observational
- Supporting Parental Decision-Making After Life-Limiting Fetal Diagnoses: The Role of Perinatal Hospice and the NOVA-L Decision Support System.Healthcare (Basel, Switzerland) · 2026Article
- Hospital organisation and healthcare providers' barriers in the management of fetuses and newborns affected by life-limiting or life-threatening conditions in Italy: a national survey.European journal of pediatrics · 2026Article
- Identifying aspects of palliative and end-of-life care that are most important to people with lived experience and can be measured using routine data: a series of patient and public involvement workshops.Journal of patient-reported outcomes · 2026Article
52 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
backgroundPrevious studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services.
aimTo estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population.
designObservational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence. SETTING/
participantsAll children aged 0-19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18.
resultsData on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5-27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0-66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7-61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9-27.5)).The prevalence was highest among the most deprived group and in children of Pakistani origin.Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7-66.3) to 84.22 (95%CI 78.66-90.17) per 10,000 by 2030.
conclusionsThe prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children.
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Registered trials
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