title: Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model.
abstract: The need for evidence-based medicine, including comparative effectiveness studies and patient-centered outcomes research, has become a major healthcare focus. To date, a comprehensive list of genetic counseling outcomes, as espoused by genetic counselors, has not been established and thus, identification of outcomes unique to genetic counseling services has become a priority for the National Society of Genetic Counselors (NSGC). The purpose of this study was to take a critical first step at identifying a more comprehensive list of genetic counseling outcomes. This paper describes the results of a focus group study using the Reciprocal-Engagement Model (REM) as a framework to characterize patient-centered outcomes of genetic counseling clinical practice. Five focus groups were conducted with 27 peer nominated participants who were clinical genetic counselors, genetic counseling program directors, and/or outcomes researchers in genetic counseling. Members of each focus group were asked to identify genetic counseling outcomes for four to five of the 17 goals of the REM. A theory-driven, thematic analysis of focus group data yielded 194 genetic counseling outcomes across the 17 goals. Participants noted some concerns about how genetic counseling outcomes will be measured and evaluated given varying stakeholders and the long-term nature of genetic concerns. The present results provide a list of outcomes for use in future genetic counseling outcomes research and for empirically-supported clinical interventions.
authors.affiliation: Department of Educational Psychology, University of Minnesota, 250 Education Sciences Building, 56 E. River Road, Minneapolis, MN, 55455, USA. redli009@umn.edu.
authors.forename: Krista
authors.initials: K
authors.lastname: Redlinger-Grosse
authors.affiliation: Department of Educational Psychology, University of Minnesota, 250 Education Sciences Building, 56 E. River Road, Minneapolis, MN, 55455, USA.
authors.forename: Patricia McCarthy
authors.initials: PM
authors.lastname: Veach
authors.affiliation: Cancer Genetics Risk Assessment Program, St. Vincent Hospital, Indianapolis, IN, USA.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Cohen
authors.affiliation: Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, MN, USA.
authors.forename: Bonnie S
authors.initials: BS
authors.lastname: LeRoy
authors.affiliation: Department of Psychology, Austin College, Sherman, TX, USA.
authors.forename: Ian M
authors.initials: IM
authors.lastname: MacFarlane
authors.affiliation: Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, MN, USA.
authors.forename: Heather
authors.initials: H
authors.lastname: Zierhut
mesh_terms: D000328:Adult; D019317:Evidence-Based Medicine; D005260:Female; D017144:Focus Groups; D005817:Genetic Counseling / Q000379:methods*; D006801:Humans; D008962:Models, Theoretical; D017063:Outcome Assessment, Health Care / Q000379:methods*
keywords: Focus group; Genetic counseling; Goals; Outcomes; Outcomes research; Reciprocal-engagement model