title: The impact of variation in access to care on the management of Hirschsprung disease.
abstract: BACKGROUND
  Variation in access to care has a significant impact on the disease management process and outcomes. Variable access to care might have similar effects on the management of Hirschsprung disease (HD). However, such variation has not been highlighted.
  
  
  METHODS
  All patients referred to 3 academic centers (ACs) with HD were reviewed. Patient presentations, referral patterns, timing, and type of surgical intervention were compared between patients born in AC and those born in non-AC. Babies born with major congenital anomalies (MCAs) or total colonic HD were excluded.
  
  
  RESULTS
  Between 1998 and 2011, 129 patients were identified. After excluding 30 patients, 99 were split into 20 inborn patients (AC) and 79 outborn patients. Outborn patients more often presented with constipation (95% vs 65%, P = .001), whereas inborn patients presented with feeding intolerance or vomiting (75% vs 39%, P = .004). Outborn patients were diagnosed and had their pull-through (PT) at an older median age (in days) of 186 (1-2621) vs 4.5 (1-451) (P = .001) and 345 (11-2757) vs 92 (3-928) (P = .001), respectively. Moreover, inborn patients were more likely to undergo primary PT (75% vs 46%, P = .02) and avoid bowel diversion (95% vs 66%, P = .02).
  
  
  CONCLUSIONS
  Variation in access to care can have a significant impact on the quality of care delivery in HD. Limited access to AC is associated with staged PT in addition to delay in the diagnosis and management.
authors.affiliation: College of Medicine, King Saud University, Riyadh, Saudi Arabia. aaljazaeri@ksu.edu.sa
authors.forename: Ayman
authors.initials: A
authors.lastname: Al-Jazaeri
authors.forename: Saud
authors.initials: S
authors.lastname: Al-Shanafey
authors.forename: Mohammad
authors.initials: M
authors.lastname: Zamakhshary
authors.forename: Wafa
authors.initials: W
authors.lastname: Al-Jarbou
authors.forename: Eman
authors.initials: E
authors.lastname: Hajr
authors.forename: Mohammed
authors.initials: M
authors.lastname: Breakeit
authors.forename: Safi
authors.initials: S
authors.lastname: Qutob
mesh_terms: D000046:Academic Medical Centers / Q000592:standards* / Q000706:statistics & numerical data; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D003106:Colon / Q000601:surgery; D003125:Colostomy; D057210:Delayed Diagnosis; D013505:Digestive System Surgical Procedures / Q000592:standards* / Q000706:statistics & numerical data; D005260:Female; D006297:Health Services Accessibility; D054625:Healthcare Disparities; D006627:Hirschsprung Disease / Q000175:diagnosis / Q000601:surgery; D006764:Hospitals, Community / Q000592:standards* / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010043:Outcome and Process Assessment, Health Care; D011787:Quality of Health Care; D012017:Referral and Consultation / Q000706:statistics & numerical data; D012189:Retrospective Studies; D012529:Saudi Arabia