title: Translating advances in cardiogenetics into effective clinical practice.
abstract: In this article we describe a qualitative research study in which we explored individuals' subjective experiences of both genetic testing and cardiogenetic disorders. Using a grounded theory approach, we coded and analyzed interview and focus group transcripts from 50 participants. We found that just under half of the participants who received their diagnosis during the study reported difficulty understanding information about both the purpose of genetic testing and their cardiac disease. A high level of anxiety about genetic testing and cardiac symptoms exacerbated individuals' cognitive confusion. Participants reported both positive and negative interactions with the medical community, depending on health care professionals' knowledge of cardiogenetic disorders. Overall, participants expressed a range of attitudes--positive, negative, and ambivalent--toward genetic testing. We conclude with a discussion of the barriers to achieving effective clinical care for genetic conditions and offer suggestions for improving collaborative decision making between physicians and patients.
authors.affiliation: Yeshiva University, Bronx, New York, USA louisesilverstein@gmail.com.
authors.forename: Louise Bordeaux
authors.initials: LB
authors.lastname: Silverstein
authors.affiliation: Yeshiva University, Bronx, New York, USA.
authors.forename: Marina
authors.initials: M
authors.lastname: Stolerman
authors.affiliation: Yeshiva University, Bronx, New York, USA.
authors.forename: Nadia
authors.initials: N
authors.lastname: Hidayatallah
authors.affiliation: Yeshiva University, Bronx, New York, USA.
authors.forename: Thomas
authors.initials: T
authors.lastname: McDonald
authors.affiliation: Yeshiva University, Bronx, New York, USA.
authors.forename: Christine A
authors.initials: CA
authors.lastname: Walsh
authors.affiliation: Yeshiva University, Bronx, New York, USA.
authors.forename: Esma
authors.initials: E
authors.lastname: Paljevic
authors.affiliation: Yeshiva University, Bronx, New York, USA.
authors.forename: Lilian L
authors.initials: LL
authors.lastname: Cohen
authors.affiliation: Yeshiva University, Bronx, New York, USA.
authors.forename: Robert W
authors.initials: RW
authors.lastname: Marion
authors.affiliation: Yeshiva University, New York, New York, USA.
authors.forename: David
authors.initials: D
authors.lastname: Wasserman
authors.affiliation: Yeshiva University, Bronx, New York, USA.
authors.forename: Siobhan M
authors.initials: SM
authors.lastname: Dolan
mesh_terms: D000328:Adult; D000368:Aged; D001145:Arrhythmias, Cardiac / Q000235:genetics*; D001290:Attitude; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D005820:Genetic Testing / Q000706:statistics & numerical data*; D066296:Grounded Theory; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010348:Patient Care Team; D010817:Physician-Patient Relations; D036301:Qualitative Research
keywords: communication, medical; genetics; health care, interprofessional; health care, teamwork; heart health
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