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