title: Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study.
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.
authors.affiliation: Nursing Science, Faculty of Medicine, Bernoullistrasse 28, 4056, Basel, Switzerland. maria.katapodi@unibas.ch.|University of Michigan School of Nursing, 400 North Ingalls Building, Ann Arbor, MI, 48109, USA. maria.katapodi@unibas.ch.
authors.forename: Maria C
authors.identifier: 0000-0003-3903-3750
authors.initials: MC
authors.lastname: Katapodi
authors.affiliation: Michigan Department of Health and Human Services, 333 S. Grand Ave., P.O. Box 30195, Lansing, MI, 48909, USA.
authors.forename: Deb
authors.initials: D
authors.lastname: Duquette
authors.affiliation: University of Michigan School of Nursing, 400 North Ingalls Building, Ann Arbor, MI, 48109, USA.
authors.forename: James J
authors.initials: JJ
authors.lastname: Yang
authors.affiliation: University of Michigan School of Nursing, 400 North Ingalls Building, Ann Arbor, MI, 48109, USA.
authors.forename: Kari
authors.initials: K
authors.lastname: Mendelsohn-Victor
authors.affiliation: Michigan Department of Health and Human Services, 333 S. Grand Ave., P.O. Box 30195, Lansing, MI, 48909, USA.
authors.forename: Beth
authors.initials: B
authors.lastname: Anderson
authors.affiliation: Nursing Science, Faculty of Medicine, Bernoullistrasse 28, 4056, Basel, Switzerland.
authors.forename: Christos
authors.initials: C
authors.lastname: Nikolaidis
authors.affiliation: University of Michigan School of Nursing, 400 North Ingalls Building, Ann Arbor, MI, 48109, USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Mancewicz
authors.affiliation: University of Michigan School of Nursing, 400 North Ingalls Building, Ann Arbor, MI, 48109, USA.
authors.forename: Laurel L
authors.initials: LL
authors.lastname: Northouse
authors.affiliation: Ohio State University College of Nursing, 1585 Neil Ave, Columbus, OH, 43210, USA.
authors.forename: Sonia
authors.initials: S
authors.lastname: Duffy
authors.affiliation: University of Michigan School of Nursing, 400 North Ingalls Building, Ann Arbor, MI, 48109, USA.
authors.forename: David
authors.initials: D
authors.lastname: Ronis
authors.affiliation: University of Michigan Comprehensive Cancer Center, 1500 East Medical Center Drive, CCGC 6-303, Ann Arbor, MI, 48109-0944, USA.
authors.forename: Kara J
authors.initials: KJ
authors.lastname: Milliron
authors.affiliation: Swiss Tropical and Public Health Institute, University of Basel, Socinstrasse 57, 4051, Basel, Switzerland.
authors.forename: Nicole
authors.initials: N
authors.lastname: Probst-Herbst
authors.affiliation: University of Michigan, School of Medicine, 1500 E Medical Center Dr, Ann Arbor, MI, 48109, USA.
authors.forename: Sofia D
authors.initials: SD
authors.lastname: Merajver
authors.affiliation: University of Michigan, School of Public Health, 1415 Washington Heights, Ann Arbor, MI, 48109, USA.
authors.forename: Nancy K
authors.initials: NK
authors.lastname: Janz
authors.affiliation: Michigan Cancer Surveillance Program, 333 S. Grand Ave, P.O. Box 30195, Lansing, MI, 48909, USA.
authors.forename: Glenn
authors.initials: G
authors.lastname: Copeland
authors.affiliation: University of Michigan, School of Public Health, 1415 Washington Heights, Ann Arbor, MI, 48109, USA.
authors.forename: Scott
authors.initials: S
authors.lastname: Roberts
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology; D003376:Counseling; D003863:Depression; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics* / Q000523:psychology; D018579:Patient Selection; D012042:Registries; D012307:Risk Factors; D011795:Surveys and Questionnaires; D017741:Survivors
keywords: At-risk relatives; Cancer registry; Public health genomic trials; Recruitment; Young breast cancer survivors