Author ORCID Identifier

https://orcid.org/0000-0002-9108-5884

Date of Graduation

5-2021

Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Jessica Corredor, MS, CGC

Committee Member

Michael Roth, MD

Committee Member

Susan Peterson, PhD, MPH

Committee Member

Aarti Ramdaney, MS, CGC

Committee Member

Erica Bednar, MS, MPH, CGC

Abstract

Adolescent and young adult (AYA) cancer patients face a unique set of challenges when navigating cancer treatment and survivorship. For many patient populations, motivational factors to pursue genetic counseling/testing have been described, but these motivational factors in AYA cancer patients have yet to be explored. The goal of this study was to describe AYA cancer patients’ decision-making process, including motivational factors and barriers as it relates to genetic counseling/testing. We conducted a qualitative study consisting of semi-structured interviews with 30 individuals from the AYA Program at MD Anderson Cancer Center who attended or were referred to a genetic counseling appointment. Data analysis showed that motivational factors for patients who attended and/or were referred but did not attend a genetic counseling appointment include learning about genetic counseling, family, gaining information, affordability, and easing worry. For those who were referred but did not attend their genetic counseling appointment, the following barriers emerged as themes: scheduling or other priorities, worry, and cost. The majority of those who did not attend their appointment expressed that genetic counseling was something they would pursue eventually. Our data indicated that AYAs have similar motivational factors of other patient populations, but their younger age of diagnosis alters the lens of how these factors affect patient decision making. Additionally, while there are barriers limiting access to genetic counseling/testing, they do not decrease the interest in genetic testing/counseling for most patients.

Keywords

Adolescent and young adult cancer patients, genetic counseling, decision making, motivational factors, barriers

Available for download on Friday, April 15, 2022

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