Evaluation of genetic counseling among cystic fibrosis carriers, Michigan Newborn Screening
dc.contributor.author | Kleyn, Mary J. | en_US |
dc.contributor.author | Langbo, Carrie | en_US |
dc.contributor.author | Abdulhamid, Ibrahim | en_US |
dc.contributor.author | Adamski, Craig R. | en_US |
dc.contributor.author | Allan, Catherine | en_US |
dc.contributor.author | Carmany, Erin P. | en_US |
dc.contributor.author | Gregoire‐bottex, M. Myrtha | en_US |
dc.contributor.author | Homnick, Douglas | en_US |
dc.contributor.author | Schuen, John | en_US |
dc.contributor.author | Nasr, Samya Z. | en_US |
dc.date.accessioned | 2013-02-12T19:00:24Z | |
dc.date.available | 2014-04-02T15:08:08Z | en_US |
dc.date.issued | 2013-02 | en_US |
dc.identifier.citation | Kleyn, Mary J.; Langbo, Carrie; Abdulhamid, Ibrahim; Adamski, Craig R.; Allan, Catherine; Carmany, Erin P.; Gregoire‐bottex, M. Myrtha ; Homnick, Douglas; Schuen, John; Nasr, Samya Z. (2013). "Evaluation of genetic counseling among cystic fibrosis carriers, Michigan Newborn Screening ." Pediatric Pulmonology 48(2): 123-129. <http://hdl.handle.net/2027.42/96254> | en_US |
dc.identifier.issn | 8755-6863 | en_US |
dc.identifier.issn | 1099-0496 | en_US |
dc.identifier.uri | https://hdl.handle.net/2027.42/96254 | |
dc.description.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. Pediatr Pulmonol. 2013; 48:123–129. © 2012 Wiley Periodicals, Inc. | en_US |
dc.publisher | Wiley Subscription Services, Inc., A Wiley Company | en_US |
dc.subject.other | Positive Screen | en_US |
dc.subject.other | Trait | en_US |
dc.subject.other | Quality Improvement | en_US |
dc.subject.other | Process | en_US |
dc.title | Evaluation of genetic counseling among cystic fibrosis carriers, Michigan Newborn Screening | en_US |
dc.type | Article | en_US |
dc.rights.robots | IndexNoFollow | en_US |
dc.subject.hlbsecondlevel | Pediatrics | en_US |
dc.subject.hlbtoplevel | Health Sciences | en_US |
dc.description.peerreviewed | Peer Reviewed | en_US |
dc.contributor.affiliationum | University of Michigan Cystic Fibrosis Center, Ann Arbor, Michigan | en_US |
dc.contributor.affiliationother | 201 Townsend Street, Lansing, MI 48909. | en_US |
dc.contributor.affiliationother | Michigan Department of Community Health, Lansing, Michigan | en_US |
dc.contributor.affiliationother | Detroit Medical Center, Children's Hospital of Michigan, Cystic Fibrosis Center, Detroit, Michigan | en_US |
dc.contributor.affiliationother | Michigan State University Cystic Fibrosis Center, Lansing, Michigan | en_US |
dc.contributor.affiliationother | Helen DeVos Cystic Fibrosis Care Center, Grand Rapids, Michigan | en_US |
dc.contributor.affiliationother | Detroit Medical Center, Children's Hospital of Michigan, Division of Genetic and Metabolic Disorders, Detroit, Michigan | en_US |
dc.contributor.affiliationother | Western Michigan University School of Medicine, Kalamazoo, Michigan | en_US |
dc.identifier.pmid | 23169573 | en_US |
dc.description.bitstreamurl | http://deepblue.lib.umich.edu/bitstream/2027.42/96254/1/22703_ftp.pdf | |
dc.identifier.doi | 10.1002/ppul.22703 | en_US |
dc.identifier.source | Pediatric Pulmonology | en_US |
dc.identifier.citedreference | Lagoe E, Labella S, Arnold G, Rowley PT. Cystic fibrosis newborn screening: a pilot study to maximize carrier screening. Genet Test 2005; 9: 255 – 260. | en_US |
dc.identifier.citedreference | National Newborn Screening and Genetics Resource Center. National Newborn Screening Status Report. 2012; Available from: http://genes‐r‐us.uthscsa.edu/nbsdisorders.htm. | en_US |
dc.identifier.citedreference | Comeau AM, Parad R, Gerstle R, O'Sullivan BP, Dorkin HL, Dovey M, Haver K, Martin T, Eaton RB. Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result. J Pediatr 2005; 147: S98 – S100. | en_US |
dc.identifier.citedreference | American Board of Genetic Counseling. Practice‐Based Competencies. 2006; Available from: http://www.abgc.net/docs/Practice%20Based%20Competencies_Aug%202006%2010‐29‐09.pdf. | en_US |
dc.identifier.citedreference | Dillard JP, Tluczek A. Information flow after a positive newborn screening for cystic fibrosis. J Pediatr 2005; 147: S94 – S97. | en_US |
dc.identifier.citedreference | Korzeniewski SJ, Grigorescu V, Copeland G, Gu G, Thorburn KK, Rogers JD, Young WI. Methodological innovations in data gathering: newborn screening linkage with live births records, Michigan, 1/2007–3/2008. Matern Child Health J 2010; 14: 360 – 364. | en_US |
dc.identifier.citedreference | Cavanagh L, Compton CJ, Tluczek A, Brown RL, Farrell PM. Long‐term evaluation of genetic counseling following false‐positive newborn screen for cystic fibrosis. J Genet Couns 2010; 19: 199 – 210. | en_US |
dc.identifier.citedreference | Ciske DJ, Haavisto A, Laxova A, Rock LZ, Farrell PM. Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process. Pediatrics 2001; 107: 699 – 705. | en_US |
dc.identifier.citedreference | Lang CW, McColley SA, Lester LA, Ross LF. Parental understanding of newborn screening for cystic fibrosis after a negative sweat‐test. Pediatrics 2011; 127: 276 – 283. | en_US |
dc.identifier.citedreference | Tluczek A, Koscik RL, Modaff P, Pfeil D, Rock MJ, Farrell PM, Lifchez C, Freeman ME, Gershan W, Zaleski C, Sullivan B. Newborn screening for cystic fibrosis: parents' preferences regarding counseling at the time of infants' sweat test. J Genet Couns 2006; 15: 277 – 291. | en_US |
dc.identifier.citedreference | Farrell M, Certain L, Farrell P. Genetic counseling and risk communication services of newborn screening programs. Arch Pediatr Adolesc Med 2001; 155: 120 – 126. | en_US |
dc.identifier.citedreference | Grosse SD, Boyle CA, Botkin JR, Comeau AM, Kharrazi M, Rosenfeld M, Wilfond BS, CDC. Newborn screening for cystic fibrosis: evaluation of benefits and risks and recommendations for state newborn screening programs. MMWR Recomm Rep 2004; 53: 1 – 36. | en_US |
dc.owningcollname | Interdisciplinary and Peer-Reviewed |
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