TY - JOUR
T1 - Preferences for learning different types of genome sequencing results among young breast cancer patients
T2 - Role of psychological and clinical factors
AU - Kaphingst, Kimberly A.
AU - Ivanovich, Jennifer
AU - Lyons, Sarah
AU - Biesecker, Barbara
AU - Dresser, Rebecca
AU - Elrick, Ashley
AU - Matsen, Cindy
AU - Goodman, Melody
N1 - Funding Information:
Acknowledgments: The authors thank the women who agreed to participate in the study and the research staff. This work was supported by the National Cancer Institute, National Institutes of Health (R01CA168608) and the Intramural Research Program of the National Human Genome Research Institute.
Publisher Copyright:
© Society of Behavioral Medicine 2018.
PY - 2018/2/1
Y1 - 2018/2/1
N2 - The growing importance of genome sequencing means that patients will increasingly face decisions regarding what results they would like to learn. The present study examined psychological and clinical factors that might affect these preferences. 1,080 women diagnosed with breast cancer at age 40 or younger completed an online survey. We assessed their interest in learning various types of genome sequencing results: risk of preventable disease or unpreventable disease, cancer treatment response, uncertain meaning, risk to relatives' health, and ancestry/physical traits. Multivariable logistic regression was used to examine whether being "very" interested in each result type was associated with clinical factors: BRCA1/2 mutation status, prior genetic testing, family history of breast cancer, and psychological factors: cancer recurrence worry, genetic risk worry, future orientation, health information orientation, and genome sequencing knowledge. The proportion of respondents who were very interested in learning each type of result ranged from 16% to 77%. In all multivariable models, those who were very interested in learning a result type had significantly higher knowledge about sequencing benefits, greater genetic risks worry, and stronger health information orientation compared to those with less interest (p-values <.05). Our findings indicate that high interest in return of various types of genome sequencing results was more closely related to psychological factors. Shared decision-making approaches that increase knowledge about genome sequencing and incorporate patient preferences for health information and learning about genetic risks may help support patients' informed choices about learning different types of sequencing results.
AB - The growing importance of genome sequencing means that patients will increasingly face decisions regarding what results they would like to learn. The present study examined psychological and clinical factors that might affect these preferences. 1,080 women diagnosed with breast cancer at age 40 or younger completed an online survey. We assessed their interest in learning various types of genome sequencing results: risk of preventable disease or unpreventable disease, cancer treatment response, uncertain meaning, risk to relatives' health, and ancestry/physical traits. Multivariable logistic regression was used to examine whether being "very" interested in each result type was associated with clinical factors: BRCA1/2 mutation status, prior genetic testing, family history of breast cancer, and psychological factors: cancer recurrence worry, genetic risk worry, future orientation, health information orientation, and genome sequencing knowledge. The proportion of respondents who were very interested in learning each type of result ranged from 16% to 77%. In all multivariable models, those who were very interested in learning a result type had significantly higher knowledge about sequencing benefits, greater genetic risks worry, and stronger health information orientation compared to those with less interest (p-values <.05). Our findings indicate that high interest in return of various types of genome sequencing results was more closely related to psychological factors. Shared decision-making approaches that increase knowledge about genome sequencing and incorporate patient preferences for health information and learning about genetic risks may help support patients' informed choices about learning different types of sequencing results.
KW - Breast cancer
KW - Decision support
KW - Genome sequencing
KW - Genomic knowledge
KW - Patient preferences
KW - Return of results
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U2 - 10.1093/tbm/ibx042
DO - 10.1093/tbm/ibx042
M3 - Article
C2 - 29385583
AN - SCOPUS:85044583795
VL - 8
SP - 71
EP - 79
JO - Translational Behavioral Medicine
JF - Translational Behavioral Medicine
SN - 1869-6716
IS - 1
ER -