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Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors
Author(s) -
Zierhut Heather A.,
Shan K. M.,
Cragun D. L.,
Cohen S. A.
Publication year - 2016
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-015-9930-9
Subject(s) - genetic counseling , focus group , psychosocial , specialty , medicine , family medicine , qualitative research , genetic testing , medical education , receipt , medical genetics , set (abstract data type) , categorization , psychology , clinical psychology , genetics , psychiatry , computer science , artificial intelligence , programming language , social science , marketing , sociology , world wide web , gene , business , biology
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.