title: Improving communication between doctors and parents after newborn screening.
abstract: BACKGROUND
  Newborn screening (NBS) enables early treatment, and some consider it a natural vehicle for genetic screening. Bioethicists argue for caution since families of infants with carrier status can develop psychosocial complications. This paper describes the methods and feasibility of Wisconsin's statewide project for quality improvement of communication and psychosocial outcomes after NBS.
  
  
  METHODS
  When NBS identifies carrier status for cystic fibrosis or sickle cell, we contact primary care providers (PCPs), answer questions, and invite them to rehearse informing the parents. Three months later, we telephone the parents, assess knowledge and psychosocial outcomes, provide counseling, and assist with self-referral to further resources. Afterward, evaluation surveys are provided to the parents, to be returned anonymously.
  
  
  RESULTS
  Birthing facilities provided accurate PCP names for 73% of 817 infants meeting inclusion criteria; we identified PCPs for 21% more. We reached 47.3% of PCPs in time to invite a rehearsal; 60% of these accepted. We successfully called 50.2% of eligible parents; 61% recalled a PCP explanation, and 48.5% evaluated the explanation favorably. Evaluations by parents with limited health literacy were less favorable.
  
  
  CONCLUSIONS
  It is feasible to follow parents for psychosocial outcomes after NBS. Preliminary data about communication is mixed, but further data will describe psychosocial outcomes and investigate outcomes' associations with communication.
authors.affiliation: Center for Patient Care and Outcomes Research, Medical College of Wisconsin, 8701 Watertown Plank Rd, Milwaukee, WI 53226, USA. mfarrell@mcw.edu
authors.forename: Michael H
authors.initials: MH
authors.lastname: Farrell
authors.forename: Stephanie A
authors.initials: SA
authors.lastname: Christopher
authors.forename: Audrey
authors.initials: A
authors.lastname: Tluczek
authors.forename: Karen
authors.initials: K
authors.lastname: Kennedy-Parker
authors.forename: Alison
authors.initials: A
authors.lastname: La Pean
authors.forename: Kerry
authors.initials: K
authors.lastname: Eskra
authors.forename: Jenelle
authors.initials: J
authors.lastname: Collins
authors.forename: Gary
authors.initials: G
authors.lastname: Hoffman
authors.forename: Julie
authors.initials: J
authors.lastname: Panepinto
authors.forename: Philip M
authors.initials: PM
authors.lastname: Farrell
mesh_terms: D000755:Anemia, Sickle Cell / Q000175:diagnosis*; D003142:Communication; D003266:Continuity of Patient Care; D003550:Cystic Fibrosis / Q000175:diagnosis*; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D015997:Neonatal Screening / Q000379:methods* / Q000523:psychology; D010290:Parents / Q000523:psychology*; D010820:Physicians; D011320:Primary Health Care; D011368:Professional-Family Relations; D011795:Surveys and Questionnaires; D014922:Wisconsin