Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study
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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.
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.
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.
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.
KeywordsYoung breast cancer survivors At-risk relatives Cancer registry Recruitment Public health genomic trials
Jenna McLoskly, CGC, Cancer-Genomics Program—Michigan Department of Health and Human Services for patient and at-risk relative identification, recruitment, and assessment of eligibility.
Compliance with ethical standards
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.
Conflict of interest
Maria C. Katapodi was the Principal Investigator of this study and received research support from DCD and RWJF. Debra Duquette declares that she has no conflict of interest James J. Yang declares that he has no conflict of interest. Kari Mendelsohn-Victor declares that she has no conflict of interest Beth Anderson declares that she has no conflict of interest. Christos Nikolaidis declares that he has no conflict of interest Emily Mancewicz declares that she has no conflict of interest Laurel L. Northouse declares that she has no conflict of interest Sonia Duffy declares that she has no conflict of interest. David Ronis declares that he has no conflict of interest Kara J. Milliron declares that she has no conflict of interest. Nicole Probst-Herbst declares that she has no conflict of interest Sofia D. Merajver declares that she has no conflict of interest. Nancy K. Janz declares that she has no conflict of interest. Glenn Copeland declares that he has no conflict of interest. J. Scott Roberts declares that he has no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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