Date of Award

Spring 2021

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Whitney Dobek

Abstract

Approximately 5-10% of cancers are thought to be hereditary, caused by pathogenic variants in genes associated with inherited cancer syndromes. Previvors, individuals who have a higher predisposition to cancer due to genetic or other risk factors, have specific healthcare and psychological needs that may be better served by a specialized management clinic. This study compared the experiences of previvors who had access to a specialized management clinic with those who did not, in order to better understand the unique needs of previvors. This study utilized a mixed methods design including an online survey (N=26) and semi-structured phone interview (N=6). Overall, previvors with access to a specialized management expressed a reduction in stress level (N=5), expedited necessary medical care (N=2), access to a simplified clinical process (N=5), and provision of information needed to make informed decisions regarding their medical care (N=8). Previvors who did not have access to a specialty clinic described challenges with finding information about their risk (N=4), receiving care from general practitioners (N=3), and having questions unanswered by healthcare providers (N=6), further supporting previous literature that investigated the nuanced care required by previvors. Previvors without access to a management clinic desired a team of specialists familiar with genetics, a forum to ask questions, and a clinic that would ensure their care meets the current recommendations. This study demonstrates the need for specialized management clinics designed with previvors’ needs in mind in order to provide these patients with the most appropriate care.

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