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Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry : a methodological study

Katapodi, Maria C. and Duquette, Deb and Yang, James J. and Mendelsohn-Victor, Kari and Anderson, Beth and Nikolaidis, Christos and Mancewicz, Emily and Northouse, Laurel L. and Duffy, Sonia and Ronis, David and Milliron, Kara J. and Probst-Herbst, Nicole and Merajver, Sofia D. and Janz, Nancy K. and Copeland, Glenn and Roberts, Scott. (2017) Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry : a methodological study. Cancer Causes & Control, 28 (3). pp. 191-201.

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Official URL: http://edoc.unibas.ch/54732/

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Abstract

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.
Faculties and Departments:09 Associated Institutions > Swiss Tropical and Public Health Institute (Swiss TPH) > Department of Epidemiology and Public Health (EPH) > Chronic Disease Epidemiology > Genetic Epidemiology of Non-Communicable Diseases (Probst-Hensch)
03 Faculty of Medicine > Departement Public Health > Sozial- und Präventivmedizin > Genetic Epidemiology of Non-Communicable Diseases (Probst-Hensch)
09 Associated Institutions > Swiss Tropical and Public Health Institute (Swiss TPH)
UniBasel Contributors:Probst Hensch, Nicole
Item Type:Article, refereed
Publisher:Springer
ISSN:0957-5243
e-ISSN:1573-7225
Note:Publication type according to Uni Basel Research Database: Journal article
Identification Number:
Last Modified:09 Oct 2017 14:43
Deposited On:29 May 2017 11:48

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