title: Cost of ambulatory care for the pediatric intestinal failure patient: One-year follow-up after primary discharge.
abstract: BACKGROUND
  Survival of children with intestinal failure has improved over the last decade, resulting in increased health care expenditures. Our objective was to determine outpatient costs for the first year after primary discharge.
  
  
  METHODS
  A retrospective analysis was performed in pediatric intestinal failure (PIF) patients between 2010 and 2012. Patients were stratified into 3 groups (1=enteral support with no devices [7 patients], 2=enteral support with devices (gastrostomy and/or ostomy) [19 patients], 3=home parenteral nutrition (HPN) [22 patients]). Data abstraction included clinical characteristics and costs related to medication, enteral/parenteral nutrition, and supplies were calculated. Data were analyzed using one way ANOVA.
  
  
  RESULTS
  Forty-eight patients (mean age 7.6months; 31 males [65%]) were studied. See attached table for results. HPN patients had significantly more ambulatory visits (p<0.0001), number of admitted days (p=0.01), and productive days lost (p<0.0001). Total cost of care was significantly higher for HPN patients (mean=$320,368.50, p<0.0001) when compared to other groups. Costs covered by the health care system were significantly higher for patients on HPN (mean=$316,101.56, p<0.0001).
  
  
  CONCLUSIONS
  The outpatient expenditures to care for PIF patients in the first year post primary discharge are significant. Our single payer health care system supports the majority of costs, but families are also incurring expenses related to travel and lost productivity. Children on HPN have more visits to hospital, but have access to more funding options. Children solely on gastrostomy or stoma therapy, however, have a significantly greater personal financial burden.
authors.affiliation: Group for Improvement of Intestinal Function and Treatment (GIFT), The Hospital for Sick Children, University of Toronto, Canada.
authors.forename: Christina
authors.initials: C
authors.lastname: Kosar
authors.affiliation: Group for Improvement of Intestinal Function and Treatment (GIFT), The Hospital for Sick Children, University of Toronto, Canada.
authors.forename: Karen
authors.initials: K
authors.lastname: Steinberg
authors.affiliation: Group for Improvement of Intestinal Function and Treatment (GIFT), The Hospital for Sick Children, University of Toronto, Canada.
authors.forename: Nicole
authors.initials: N
authors.lastname: de Silva
authors.affiliation: Group for Improvement of Intestinal Function and Treatment (GIFT), The Hospital for Sick Children, University of Toronto, Canada; Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, University of Toronto, Canada.
authors.forename: Yaron
authors.initials: Y
authors.lastname: Avitzur
authors.affiliation: Group for Improvement of Intestinal Function and Treatment (GIFT), The Hospital for Sick Children, University of Toronto, Canada; Division of General and Thoracic Surgery, The Hospital for Sick Children, University of Toronto, Canada. Electronic address: paul.wales@sickkids.ca.
authors.forename: Paul W
authors.initials: PW
authors.lastname: Wales
mesh_terms: D000553:Ambulatory Care / Q000191:economics*; D000704:Analysis of Variance; D002648:Child; D004750:Enteral Nutrition / Q000191:economics; D005260:Female; D005500:Follow-Up Studies; D005774:Gastrostomy / Q000191:economics; D017048:Health Care Costs; D006760:Hospitalization / Q000191:economics; D006801:Humans; D007223:Infant; D007422:Intestines / Q000002:abnormalities*; D008297:Male; D016331:Parenteral Nutrition, Home / Q000191:economics; D010351:Patient Discharge; D012189:Retrospective Studies
keywords: Ambulatory; Costs; Intestinal failure; Pediatric