Objective To provide new epidemiological evidence base of information on models of hospice care for children and young adults.
Design Retrospective cohort study of children referred to a hospice.
Setting Martin House Children’s and Young Person’s Hospice in Boston Spa, North Yorkshire, UK.
Participants All children who had been referred for care at Martin House Children’s Hospice since it opened in August 1987, until May 2008.
Main outcome measures Demographic profiles and survival times overall and by diagnostic group classified by the Association of Children’s Palliative Care (ACT) Diagnostic Categories, calculated using the Kaplan– Meier and log rank pair-wise methodology.
Results Over a 20-year period, 1554 children aged from birth to 19 years were referred to Martin House, of whom 89.5% (mean age 7.45 years) were accepted. The deprivation profile, referral source and distribution of diagnoses of these children have changed over time with recently increasing numbers of non-progressive disorders (ACT category 4). The ethnicity profile has changed with an increase in the numbers of South Asian children. The overall mean survival time was 5.6 years (95% CI 5.1 to 6.1) but this differed by ACT category. Diagnostic category was significantly associated with differing survival patterns.
Conclusions There are a disproportionate number of children from areas of higher deprivation being referred for palliative care services. There has been a recent increase in the number of children from South Asian families being referred to palliative care services in Yorkshire. Survival times for children and young people receiving care from a hospice can vary from hours and days to more than 20 years.
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Funding This study was funded by Martin House Children and Young People’s Hospice (Charity No 517919).
Competing interests None.
Ethics approval Ethics approval was provided by the Medicine & Health Faculty Research Ethics Committee, University of Leeds.
Provenance and peer review Not commissioned; externally peer reviewed.
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