title: Evaluation of genetic counseling among cystic fibrosis carriers, Michigan Newborn Screening.
abstract: OBJECTIVE
  A quality improvement (QI) strategy to improve the rate of genetic counseling (GC) services was initiated in cystic fibrosis (CF) care Center E in 2010. This statewide study was conducted to determine: (1) GC rates before and after implementation of the QI strategy at Center E; (2) characteristics associated with not receiving GC; and (3) topic areas addressed during GC.
  
  
  METHODS
  The retrospective study included 1,097 CF carriers born from 2008 to 2011 identified through Michigan's Newborn Screening Program. Rate of GC services was determined for Center E and the other four CF centers before and after the QI change. Bivariate and multivariable logistic regression was used to determine associations between select characteristics and not receiving GC. Topic areas discussed during GC sessions were assessed using frequency tables.
  
  
  RESULTS
  Rate of GC services in Center E increased from 23% in 2008-2010 to 91% in 2011, while at the other centers approximately 92% received GC services across those years. In 2008-2010, being seen at Center E and black race were significantly associated with increased likelihood of not receiving GC services in adjusted analyses. In 2011, neither characteristic was associated with receipt of GC. Of 16 target topic areas, all were discussed in 85% of GC sessions.
  
  
  CONCLUSIONS
  Implementing a QI strategy of providing sweat test results at the GC appointment within Center E resulted in more CF carriers receiving comprehensive GC services. Center-specific procedure differences should be assessed to increase rate of GC services following a positive CF newborn screen.
authors.affiliation: Michigan Department of Community Health, Lansing, Michigan, USA. kleynm@michigan.gov
authors.forename: Mary J
authors.initials: MJ
authors.lastname: Kleyn
authors.forename: Carrie
authors.initials: C
authors.lastname: Langbo
authors.forename: Ibrahim
authors.initials: I
authors.lastname: Abdulhamid
authors.forename: Craig R
authors.initials: CR
authors.lastname: Adamski
authors.forename: Catherine
authors.initials: C
authors.lastname: Allan
authors.forename: Erin P
authors.initials: EP
authors.lastname: Carmany
authors.forename: M Myrtha
authors.initials: MM
authors.lastname: Gregoire-Bottex
authors.forename: Douglas
authors.initials: D
authors.lastname: Homnick
authors.forename: John
authors.initials: J
authors.lastname: Schuen
authors.forename: Samya Z
authors.initials: SZ
authors.lastname: Nasr
mesh_terms: D000328:Adult; D003550:Cystic Fibrosis / Q000235:genetics*; D019005:Cystic Fibrosis Transmembrane Conductance Regulator / Q000235:genetics; D005260:Female; D006580:Genetic Carrier Screening / Q000379:methods; D005817:Genetic Counseling / Q000379:methods / Q000706:statistics & numerical data*; D005820:Genetic Testing / Q000379:methods*; D006579:Heterozygote; D006801:Humans; D007231:Infant, Newborn; D016015:Logistic Models; D008824:Michigan; D015997:Neonatal Screening / Q000379:methods*; D058996:Quality Improvement; D012189:Retrospective Studies; D055815:Young Adult
chemical_list: D019005:Cystic Fibrosis Transmembrane Conductance Regulator