title: Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result.
abstract: OBJECTIVE
  To evaluate compliance with recommendations for sweat testing/specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result.
  
  
  METHODS
  All infants with positive CF NBS results require a diagnostic sweat test at a CF center. Results that were "screen positive and diagnosis negative" prompted family genetic counseling. Parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center.
  
  
  RESULTS
  At each of the 5 MA CF centers, 95% of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32%-90%) with completion of genetic counseling between CF centers.
  
  
  CONCLUSIONS
  CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic counseling.
authors.affiliation: New England Newborn Screening Program of the University of Massachusetts Medical School, MA 02130, USA. anne.comeau@umassmed.edu
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Comeau
authors.forename: Richard
authors.initials: R
authors.lastname: Parad
authors.forename: Robert
authors.initials: R
authors.lastname: Gerstle
authors.forename: Brian P
authors.initials: BP
authors.lastname: O'Sullivan
authors.forename: Henry L
authors.initials: HL
authors.lastname: Dorkin
authors.forename: Mark
authors.initials: M
authors.lastname: Dovey
authors.forename: Kenan
authors.initials: K
authors.lastname: Haver
authors.forename: Tom
authors.initials: T
authors.lastname: Martin
authors.forename: Roger B
authors.initials: RB
authors.lastname: Eaton
mesh_terms: D000359:Aftercare / Q000458:organization & administration; D003142:Communication; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000628:therapy; D003657:Decision Making; D005817:Genetic Counseling / Q000706:statistics & numerical data*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007231:Infant, Newborn; D008404:Massachusetts; D017146:Models, Organizational; D008960:Models, Psychological; D015997:Neonatal Screening / Q000523:psychology*; D033282:Parental Consent; D010290:Parents / Q000193:education / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology / Q000706:statistics & numerical data; D015397:Program Evaluation; D012189:Retrospective Studies; D013997:Time Factors