Date of Award

2017

Document Type

Open Access Thesis

Department

Genetic Counseling

Sub-Department

School of Medicine

First Advisor

Emily Jordon

Abstract

Lynch Syndrome (LS), one of the most common hereditary cancer syndromes, is primarily known for its substantially increased risks for colorectal cancer. The incidence of gynecologic cancers (endometrial and ovarian cancers) equals or exceeds the incidence of colorectal cancers in female patients with LS. The prevention and treatment methods for these cancers can drastically affect fertility and reproduction. Previous studies with cancer patients have revealed challenges in acquiring information related to these topics; thus far, no research has assessed whether there is an informational gap regarding fertility information for women in the LS population. The purpose of this study was to identify the amount of information received related to fertility and reproduction, assess patient satisfaction, and characterize current practices of this information delivery within our target patient population.

Data was collected from 154 women with LS. Likert scales were used to quantify the amount of information provided about major themes pertaining to fertility in LS: effects of cancer treatment, risk-reducing surgeries, fertility preservation and family planning. Overall, participants were more satisfied when they received more information about certain topics within these themes. There was a distinct lack of individualization in patient care, and lack of uniformity regarding the provision of this information among healthcare providers. Participant opinions indicate that genetic counselors may be an untapped resource in the provision of fertility and reproduction information to this population.

Rights

© 2017, Rachel Elizabeth Hickey

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