How many children have palliative care needs and which of them are less likely to be actively seen by services? A cross-sectional analysis of survey data

BACKGROUND: The prevalence of children with life-limiting conditions is increasing. It is difficult to estimate palliative care needs in this population, and few studies have explored the characteristics or service use patterns of this group. The aim of this study was to estimate the number of children with palliative care needs in North West England, exploring associations between patient characteristics and service activity. METHODS: All services providing healthcare to children in North West England were surveyed to provide data on children (0-19 years) with palliative care needs within a census period (6-15 February 2023). Data collected included demographic information, diagnosis and care patterns. Point prevalence of need was calculated for all children by age group and ethnicity. Associations between patient characteristics (eg, age, ethnicity) and being actively seen by services were explored in logistic regression models. RESULTS: 49 services provided data on 1694 children. Point prevalence of need was 10.1 per 10 000 0-19-year-olds (95% CI 9.6 to 10.6). Children of South Asian ethnicity were less likely to be actively seen (defined as seen or called within the census period) than those of White ethnicity (OR 0.45, 95% CI 0.32 to 0.64). CONCLUSIONS: Disparities in the use of children and young people's palliative care services were demonstrated. Future research should focus on developing measures of complex need for palliative care for children with life-limiting conditions, as well as inclusive and appropriate interventions to address disparities.