TY - JOUR
T1 - Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry
T2 - a methodological study
AU - Katapodi, Maria C.
AU - Duquette, Deb
AU - Yang, James J.
AU - Mendelsohn-Victor, Kari
AU - Anderson, Beth
AU - Nikolaidis, Christos
AU - Mancewicz, Emily
AU - Northouse, Laurel L.
AU - Duffy, Sonia
AU - Ronis, David
AU - Milliron, Kara J.
AU - Probst-Herbst, Nicole
AU - Merajver, Sofia D.
AU - Janz, Nancy K.
AU - Copeland, Glenn
AU - Roberts, Scott
N1 - Funding Information:
This study was supported by the Centers for Disease Control and Prevention (CDC), 5U48DP001901-03 and by the Robert Wood Johnson Foundation (RWJF)???Nurse Faculty Scholars 68039 Award.
PY - 2017/3/1
Y1 - 2017/3/1
N2 - Purpose: Cancer genetic services (counseling/testing) are recommended for women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors—YBCS) and at-risk relatives. We present recruitment of YBCS, identification and recruitment of at-risk relatives, and YBCS willingness to contact their cancer-free, female relatives. Methods: A random sample of 3,000 YBCS, stratified by race (Black vs. White/Other), was identified through a population-based cancer registry and recruited in a randomized trial designed to increase use of cancer genetic services. Baseline demographic, clinical, and family characteristics, and variables associated with the Theory of Planned Behavior (TPB) were assessed as predictors of YBCS’ willingness to contact at-risk relatives. Results: The 883 YBCS (33.2% response rate; 40% Black) who returned a survey had 1,875 at-risk relatives and were willing to contact 1,360 (72.5%). From 853 invited at-risk relatives (up to two relatives per YBCS), 442 responded (51.6% response rate). YBCS with larger families, with a previous diagnosis of depression, and motivated to comply with recommendations from family members were likely to contact a greater number of relatives. Black YBCS were more likely to contact younger relatives and those living further than 50 miles compared to White/Other YBCS. Conclusion: It is feasible to recruit diverse families at risk for hereditary cancer from a population-based cancer registry. This recruitment approach can be used as a paradigm for harmonizing processes and increasing internal and external validity of large-scale public health genomic initiatives in the era of precision medicine.
AB - Purpose: Cancer genetic services (counseling/testing) are recommended for women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors—YBCS) and at-risk relatives. We present recruitment of YBCS, identification and recruitment of at-risk relatives, and YBCS willingness to contact their cancer-free, female relatives. Methods: A random sample of 3,000 YBCS, stratified by race (Black vs. White/Other), was identified through a population-based cancer registry and recruited in a randomized trial designed to increase use of cancer genetic services. Baseline demographic, clinical, and family characteristics, and variables associated with the Theory of Planned Behavior (TPB) were assessed as predictors of YBCS’ willingness to contact at-risk relatives. Results: The 883 YBCS (33.2% response rate; 40% Black) who returned a survey had 1,875 at-risk relatives and were willing to contact 1,360 (72.5%). From 853 invited at-risk relatives (up to two relatives per YBCS), 442 responded (51.6% response rate). YBCS with larger families, with a previous diagnosis of depression, and motivated to comply with recommendations from family members were likely to contact a greater number of relatives. Black YBCS were more likely to contact younger relatives and those living further than 50 miles compared to White/Other YBCS. Conclusion: It is feasible to recruit diverse families at risk for hereditary cancer from a population-based cancer registry. This recruitment approach can be used as a paradigm for harmonizing processes and increasing internal and external validity of large-scale public health genomic initiatives in the era of precision medicine.
KW - At-risk relatives
KW - Cancer registry
KW - Public health genomic trials
KW - Recruitment
KW - Young breast cancer survivors
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U2 - 10.1007/s10552-017-0858-2
DO - 10.1007/s10552-017-0858-2
M3 - Article
C2 - 28197806
AN - SCOPUS:85012902725
VL - 28
SP - 191
EP - 201
JO - Cancer Causes and Control
JF - Cancer Causes and Control
SN - 0957-5243
IS - 3
ER -