title: Characteristics of a pediatric hospice palliative care program over 15 years.
abstract: OBJECTIVE
  Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010.
  
  
  METHODS
  A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities.
  
  
  RESULTS
  The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%).
  
  
  CONCLUSIONS
  Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric life-threatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served.
authors.affiliation: University of British Columbia, Vancouver, British Columbia, Canada; Canuck Place Children's Hospice, Vancouver, British Columbia, Canada; Child & Family Research Institute, Vancouver, British Columbia, Canada; and.
authors.forename: Harold
authors.initials: H
authors.lastname: Siden
authors.affiliation: University of British Columbia, Vancouver, British Columbia, Canada; Canuck Place Children's Hospice, Vancouver, British Columbia, Canada; negar.chavoshi@canuckplace.org.
authors.forename: Negar
authors.initials: N
authors.lastname: Chavoshi
authors.affiliation: Canuck Place Children's Hospice, Vancouver, British Columbia, Canada;
authors.forename: Barbara
authors.initials: B
authors.lastname: Harvey
authors.affiliation: Canuck Place Children's Hospice, Vancouver, British Columbia, Canada; McGill University Ingram School of Nursing, Montreal, Quebec, Canada.
authors.forename: Alyson
authors.initials: A
authors.lastname: Parker
authors.affiliation: Canuck Place Children's Hospice, Vancouver, British Columbia, Canada;
authors.forename: Tanice
authors.initials: T
authors.lastname: Miller
mesh_terms: D001955:British Columbia / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005260:Female; D006738:Hospices / Q000379:methods* / Q000639:trends; D006801:Humans; D008297:Male; D010166:Palliative Care / Q000379:methods* / Q000639:trends; D010348:Patient Care Team / Q000639:trends; D010372:Pediatrics / Q000379:methods* / Q000639:trends; D012189:Retrospective Studies; D015996:Survival Rate / Q000639:trends; D013997:Time Factors
keywords: demographics; hospice care; life threatening; palliative care