title: Complex chronic conditions in Rhode Island's pediatric populace: implications for palliative and hospice services, 2000-2012.
abstract: BACKGROUND
  Pediatric patients with complex chronic conditions (CCC) can benefit from pediatric palliative and hospice care (PP/HC) services. PP/HC can be delivered in a variety of health care settings and for a multitude of conditions, but data on hospitalization patterns and on secondary illnesses in pediatric CCC patients remains scant.
  
  
  OBJECTIVE
  The study objective was to describe mortality trends for Rhode Island resident children aged 0-17 years, along with the demographics, subtypes, sites of death, and comorbidities of those with CCC.
  
  
  METHODS
  This was a retrospective cohort study using demographic, hospitalization, and clinical data from all Rhode Island Department of Health death certificates from 2000 to 2012.
  
  
  RESULTS
  Among the 1422 Rhode Island children aged 0-17 years old who died from 2000 to 2012, CCCs accounted for 27% (279/1049) of medically related deaths and 62% (145/233) of such deaths after infancy. CCC deaths were more likely at home (OR 5.202, 95% CI 2.984-9.203, p<0.001) and to have had a secondary cause of death documented (OR 3.032, 95% CI 2.259-4.067, p<0.001) than were other medically related deaths. Infants with CCCs were more likely to die in an inpatient setting (OR 5.141, 95% CI 2.718-10.026, p<0.001), whereas 1-17 year-olds with CCCs were more likely to die at home (OR 5.346, 95% CI 2.200-14.811, p<0.001) or in an emergency department (OR 3.281, 95% CI 1.363-8.721, p<0.040).
  
  
  CONCLUSIONS
  CCCs constitute a significant proportion of medically related pediatric deaths in Rhode Island and are associated with both secondary comorbidities and death at home. Specialized, multidisciplinary services are warranted and PP/HC is crucial for patient and family support.
authors.affiliation: 1 Department of Medicine, University of Massachusetts Medical School , Worcester, Massachusetts.
authors.forename: Daniel S
authors.initials: DS
authors.lastname: Jamorabo
authors.forename: Chandra P
authors.initials: CP
authors.lastname: Belani
authors.forename: Edward W
authors.initials: EW
authors.lastname: Martin
mesh_terms: D000293:Adolescent; D002423:Cause of Death / Q000639:trends; D002648:Child; D046688:Child Mortality / Q000639:trends; D002675:Child, Preschool; D002908:Chronic Disease / Q000401:mortality*; D015897:Comorbidity; D003644:Death Certificates; D005260:Female; D006699:Home Care Services / Q000639:trends; D017051:Hospice Care / Q000592:standards* / Q000639:trends; D017052:Hospital Mortality / Q000639:trends; D006801:Humans; D007223:Infant; D007226:Infant Mortality / Q000639:trends; D007231:Infant, Newborn; D008297:Male; D009026:Mortality / Q000639:trends*; D020380:Needs Assessment; D010166:Palliative Care / Q000592:standards* / Q000639:trends; D010372:Pediatrics / Q000706:statistics & numerical data*; D012189:Retrospective Studies; D012237:Rhode Island / Q000453:epidemiology; D012944:Social Support