TY - JOUR
T1 - Factors impacting adolescent and young adult cancer patients’ decision to pursue genetic counseling and testing
AU - Morand, Megan
AU - Roth, Michael
AU - Peterson, Susan K.
AU - Bednar, Erica M.
AU - Ramdaney, Aarti
AU - Livingston, J. Andrew
AU - Yarbrough, Angela
AU - Corredor, Jessica
N1 - Publisher Copyright:
© 2022, The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.
PY - 2022/6
Y1 - 2022/6
N2 - Purpose: Adolescent and young adult (AYA) cancer patients face challenges when navigating cancer treatment and survivorship. Many are at risk for cancer predisposition syndromes; however, factors influencing pursuit of genetic counseling and testing have not been reported. We describe AYA cancer patients’ decision-making process, including motivational factors and barriers, as it relates to utilization of genetic services. Methods: Thirty AYAs diagnosed with cancer previously referred for cancer predisposition genetic counseling completed semi-structured interviews via audio-only Zoom calls. Thematic analysis was used to perform qualitative analysis and identify major themes. Results: The sample comprised 21 AYAs who had genetic counseling and nine who did not. Motivational factors identified included learning genetic counseling is an available service, concern about the impact of a hereditary syndrome on family members and family planning, learning about the need for cancer screening or prevention, affordability of genetic testing, and easing worry about additional cancer risks. For those who did not pursue genetic counseling, barriers included scheduling or other priorities, worry, and cost. However, the majority expressed they would reconsider genetic counseling in the future. Conclusion: AYA cancer patients have similar motivational factors to pursue genetic counseling compared to other patients; however, their younger age of diagnosis may alter how these factors affect decision-making. While there are barriers limiting access to genetic services, they did not decrease interest in future genetic counseling for most patients. Genetic counseling and testing should be discussed with patients who previously declined genetic services.
AB - Purpose: Adolescent and young adult (AYA) cancer patients face challenges when navigating cancer treatment and survivorship. Many are at risk for cancer predisposition syndromes; however, factors influencing pursuit of genetic counseling and testing have not been reported. We describe AYA cancer patients’ decision-making process, including motivational factors and barriers, as it relates to utilization of genetic services. Methods: Thirty AYAs diagnosed with cancer previously referred for cancer predisposition genetic counseling completed semi-structured interviews via audio-only Zoom calls. Thematic analysis was used to perform qualitative analysis and identify major themes. Results: The sample comprised 21 AYAs who had genetic counseling and nine who did not. Motivational factors identified included learning genetic counseling is an available service, concern about the impact of a hereditary syndrome on family members and family planning, learning about the need for cancer screening or prevention, affordability of genetic testing, and easing worry about additional cancer risks. For those who did not pursue genetic counseling, barriers included scheduling or other priorities, worry, and cost. However, the majority expressed they would reconsider genetic counseling in the future. Conclusion: AYA cancer patients have similar motivational factors to pursue genetic counseling compared to other patients; however, their younger age of diagnosis may alter how these factors affect decision-making. While there are barriers limiting access to genetic services, they did not decrease interest in future genetic counseling for most patients. Genetic counseling and testing should be discussed with patients who previously declined genetic services.
KW - Adolescents and young adults (AYAs)
KW - Genetic counseling
KW - Genetic testing
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U2 - 10.1007/s00520-022-06974-y
DO - 10.1007/s00520-022-06974-y
M3 - Article
C2 - 35306607
AN - SCOPUS:85126773988
SN - 0941-4355
VL - 30
SP - 5481
EP - 5489
JO - Supportive Care in Cancer
JF - Supportive Care in Cancer
IS - 6
ER -