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. Overall mean survival time was 5.6 years (95% confidence interval 5.1-6.1) 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.