Graduation Year

2022

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., CGC

Committee Member

Tuya Pal, M.D.

Committee Member

Jason Beckstead, Ph.D.

Keywords

cancer risk management, genetic counseling, national guidelines, patient education

Abstract

Pathogenic variants (PV) or likely pathogenic variants (LPV) in a cancer risk gene increase lifetime risks of developing cancer. National guidelines provide evidence-based recommendations on cancer risk management (CRM) strategies tailored to the cancer risks associated with PV/LPV in different genes. Emotional responses after learning of a PV/LPV have been studied as predictors of patient adherence to CRM, but less attention has been given to whether patients remember their actual genetic test results and the impact this may have on subsequent adherence to CRM. We surveyed a group of 114 participants registered with the Inherited Cancer Registry (ICARE), all of whom have at least one PV/LPV in a cancer risk gene, have provided their laboratory report to the registry, and completed a survey asking them to self-report their cancer risk variants, CRM practices, and emotional experiences stemming from genetic testing. We found that 27% of participants omitted or self-reported at least one result inaccurately; 61% of these errors could potentially result in over- or under-management of their cancer risks. Participants with errors potentially leading to over-management were more likely to be adhering to minimum CRM guidelines than other participants and reported significantly more positive outcomes. We also found that, regardless of self-report accuracy, patients engaged in CRM in excess of national guidelines reported significantly more distress and uncertainty related to their results but also more positive outcomes. In total, 60% of patients were engaged in either less than the minimum recommended CRM or CRM beyond the scope of national guidelines. These findings suggest that interventions to improve patient recall and promote adherence to evidence-based CRM are needed among a large segment of patients with hereditary cancer predispositions.

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