Palliative care in Yorkshire, UK 1987-2008: survival and mortality in a hospice.
OBJECTIVE
To provide new epidemiological evidence base of information on models of hospice care for children and young adults.


METHODS
Retrospective cohort study of children referred to a hospice.


METHODS
Martin House Children's and Young Person's Hospice in Boston Spa, North Yorkshire, UK.


METHODS
All children who had been referred for care at Martin House Children's Hospice since it opened in August 1987, until May 2008.


METHODS
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.
Taylor
L K
LK
Paediatric Epidemiology Group, Division of Epidemiology and Biostatistics, Room 8.49, Worsley Building, Clarendon Way, University of Leeds, Leeds LS2 9JT, UK. l.k.fraser@leeds.ac.uk
Miller
M
M
Joffe
T
T
Parslow
R C
RC
Aldridge
J
J
Bailey
C C
CC
McKinney
P A
PA
D000293:Adolescent; D000367:Age Factors; D002648:Child; D002662:Child Health Services / Q000706:statistics & numerical data* / Q000639:trends; D002675:Child, Preschool; D004739:England; D005006:Ethnicity / Q000706:statistics & numerical data; D005260:Female; D017051:Hospice Care / Q000706:statistics & numerical data* / Q000639:trends; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010166:Palliative Care / Q000706:statistics & numerical data* / Q000639:trends; D018579:Patient Selection; D011204:Poverty Areas; D012017:Referral and Consultation / Q000706:statistics & numerical data / Q000639:trends; D012189:Retrospective Studies; D012737:Sex Factors; D016019:Survival Analysis; D055815:Young Adult