Graduation Year
2023
Document Type
Thesis
Degree
M.S.P.H.
Degree Name
MS in Public Health (M.S.P.H.)
Degree Granting Department
Global Health
Major Professor
Deborah Cragun, Ph.D., M.S.
Committee Member
Stephen Aradi, M.D.
Committee Member
Nour Chanouha, M.S.
Keywords
genetic counseling, huntington disease genetic counseling, position creation, value
Abstract
Huntington disease (HD) is a hereditary, neurodegenerative autosomal dominant disorder for which there are currently no effective options to prevent the onset of symptoms. Although meeting with a genetic counselor (GC) is recommended as part of national guidelines for predictive HD genetic testing and a GC is required for Centers of Excellence, not all HD centers have hired a GC. To explore drivers for, valued outcomes of, and barriers to the creation of GC positions in clinics that treat patients with HD, we conducted semi-structured interviews with 11 individuals involved with HD clinics and/or hiring decisions at 8 clinics across the United States. Findings from thematic analysis of transcripts were compared with an existing theoretical model that describes the general process of creating new GC positions. Certain aspects of the model were confirmed, but several unique findings expanded understanding and were added to the model. We confirmed key drivers which bolstered prioritization of funding for new GC positions; these included genetic testing availability and physician champions. Drivers we identified that were not in the existing model included administrators as champions, the national protocol for HD supporting the role of a GC, and potential legal repercussions from misinterpreting genetic test results. Capacity of GCs to improve physician efficiency and benefit patients were confirmed as valued outcomes. Valued outcomes unique to our study included the variety of roles GCs can perform to support the HD clinic or other neurology clinics, contributions of genetic expertise, and maintaining Center of Excellence recognition. Finally, newly identified barriers, such as concerns about balance billing for genetic counseling (costs to patients) and challenges in role creation were added to the model. These findings may help in efforts to create new GC positions and improve access to genetic counseling in clinics that treat HD patients.
Scholar Commons Citation
Hummel, Bailey, "Healthcare Decision Makers' Perspectives on Barriers and Facilitators to Hiring Genetic Counselors in Huntington Disease (HD) Clinic Settings" (2023). USF Tampa Graduate Theses and Dissertations.
https://digitalcommons.usf.edu/etd/9883
