title: Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors.
abstract: Outcomes in the field of genetic counseling have not been well-defined or categorized, despite pressures to provide evidence-based measures in all areas of healthcare. This study describes a process to elucidate and categorize a wide-ranging set of outcomes as characterized by diverse groups of practicing genetic counselors. Semi-structured focus groups were conducted at the National Society of Genetic Counselors 2013 NSGC Annual Education Conference during an educational breakout session. A general inductive qualitative research approach was utilized to code focus group notes, categorize them into themes, and compare them across specialty groups. A total of 107 individuals participated in 14 focus groups, consisting of specialists in cancer (n = 20), general genetics (n = 40), prenatal genetics (n = 11), and "other" (n = 36). Of the twelve genetic counseling outcomes themes identified, the most common across focus groups included: 1) appropriateness of testing and accuracy of results interpretation; 2) psychosocial outcomes; 3) adherence to or receipt of appropriate medical management; and 4) patient and provider knowledge. Data assessed by specialty demonstrated similarities in outcomes themes, suggesting that a common set of genetic counseling outcomes would likely be appropriate to cover the majority of needs for the profession. Results can serve as a platform from which to build a more well-defined and comprehensive set of outcomes.
authors.affiliation: Department of Genetics, Cell Biology, and Development, University of Minnesota-Twin Cities, 420 Delaware Street SE, MMC 485, Minneapolis, MN, 55455, USA. zier0034@umn.edu.
authors.forename: Heather A
authors.initials: HA
authors.lastname: Zierhut
authors.affiliation: Mass General Cancer Center, Center for Cancer Risk Assessment, Boston, MA, 02114, USA.
authors.forename: K M
authors.initials: KM
authors.lastname: Shannon
authors.affiliation: University of South Florida and Moffitt Cancer Center, Tampa, FL, 33612, USA.
authors.forename: D L
authors.initials: DL
authors.lastname: Cragun
authors.affiliation: Cancer Genetics Risk Assessment Program, St. Vincent Hospital, Indianapolis, IN, 46260, USA.
authors.forename: S A
authors.initials: SA
authors.lastname: Cohen
mesh_terms: D000328:Adult; D000368:Aged; D000072117:Counselors / Q000592:standards*; D005260:Female; D005817:Genetic Counseling / Q000592:standards*; D006801:Humans; D008297:Male; D008875:Middle Aged; D063868:Patient Outcome Assessment; D036301:Qualitative Research; D055815:Young Adult
keywords: Genetic counseling; Genetic counseling outcomes; Healthcare outcomes; Process measures