Date of Award

Spring 2026

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Whitney Dobek

Abstract

People with an inherited cancer predisposition but have not been affected with cancer or tumors themselves are known as previvors. A previous study suggested the need for the establishment of a specialized management clinic for previvors in the Midlands of South Carolina. In 2022, the Genetic Cancer Prevention Clinic (GCPC) was established to serve this patient population. This study examined effectiveness of the GCPC in helping previvors manage their psychological and medical needs. A mixed methods design consisting of a chart review of patients enrolled in the GCPC (N=34) and a semi-structured phone interview (n=3) was used. Overall, previvors enrolled in the GCPC had a high rate of adherence to National Comprehensive Cancer Network (NCCN) recommendations for their gene mutation (n=28, 82.4%). It was also noted that 10 of the patients enrolled in the clinic had documented insurance barriers while receiving care (29.4%), and in seven of those 10 cases the barriers were able to be overcome. A single interval cancer was identified in a patient with a PALB2 mutation since the clinic started. Previvors who were interviewed described high levels of satisfaction with the GCPC in helping provide reassurance, education, and support (n=3). The interview data resulted in three themes including system navigation, emotional response from being in an oncology office, and emotional/psychosocial support provided by the clinic. Overall, patients described feeling supported by providers in the clinic regarding their mental wellbeing as well as their cancer risk management. The results also demonstrated the importance of the genetic counselor in the success and patient satisfaction of these clinics. The GCPC v appears effective in supporting previvors medically as well as psychologically. While future studies are needed to evaluate long term outcomes, the establishment of a specialized management clinic for previvors in a community oncology center fulfilled a need for a group of individuals in search of support.

Rights

© 2026, Sydney Marlene Price

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