title: Incomplete follow-up of hemoglobinopathy carriers identified by newborn screening despite reporting in electronic medical records.
abstract: OBJECTIVE
  Has the recent availability of newborn hemoglobinopathy screening results within patient electronic medical records (EMR) of birth hospitals facilitated follow-up by primary care pediatric providers?
  
  
  METHODS
  An online survey of all 137 primary care pediatric providers at a New York City academic medical center was conducted in 2008-2009 to assess practices for hemoglobin-apathy trait follow-up. Physicians were resurveyed 1 year later, following educational outreach and a letter of instruction underscoring the availability of screening results in the EMR. All 62 primary care pediatricians were surveyed at a nearby city hospital for comparison.
  
  
  RESULTS
  Overall response rate for the initial survey at the teaching hospital was 58% for pediatricians (N = 57) and family physicians (N = 23), and 50% for pediatricians at the city hospital (N = 31). Despite high prevalence of hemoglobinopathies in the population served and screening results in EMRs, only 46.2% of providers surveyed at the academic center reported routinely checking results of their infant patients: 38.6% of pediatricians and 66.7% of family practitioners. Some respondents were unaware that results are available in the EMR. The proportion of providers checking screening results was not significantly affected by educational intervention (N = 40). Provision of recommended follow-up for a positive trait result was modestly improved, especially in referring families for genetic counseling (25% to 50%, p<.01). In contrast, most pediatricians (83%) at the city hospital routinely check and perform follow-up.
  
  
  CONCLUSIONS
  Despite access to results in the EMR and targeted educational outreach, follow-up of hemoglobinopathy screening by primary care varies widely across clinical sites.
authors.affiliation: School of Nursing, Columbia University Medical Center, New York, New York 10032, USA.
authors.forename: Mara
authors.initials: M
authors.lastname: Burney
authors.forename: Kelly
authors.initials: K
authors.lastname: Schunk
authors.forename: Nelly J
authors.initials: NJ
authors.lastname: Oundjian
authors.forename: Richard G
authors.initials: RG
authors.lastname: Younge
authors.forename: Mary
authors.initials: M
authors.lastname: McCord
authors.forename: Nancy S
authors.initials: NS
authors.lastname: Green
mesh_terms: D002353:Carrier State; D003266:Continuity of Patient Care; D057286:Electronic Health Records; D005194:Family Practice / Q000592:standards; D019538:Health Care Surveys; D006297:Health Services Accessibility; D006453:Hemoglobinopathies / Q000628:therapy*; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening; D009519:New York City; D010372:Pediatrics; D011320:Primary Health Care / Q000592:standards*