title: A model for patient-direct screening and referral for familial cancer risk.
abstract: Patients at increased familial risk of cancer are sub-optimally identified and referred for genetic counseling. We describe a systematic model for information collection, screening and referral for hereditary cancer risk. Individuals from three different clinical and research populations were screened for hereditary cancer risk using a two-tier process: a 7-item screener followed by review of family history by a genetic counselor and application of published criteria. A total of 869 subjects participated in the study; 769 in this high risk population had increased familial cancer risk based on the screening questionnaire. Of these eligible participants, 500 (65.0 %) provided family histories and 332 (66.4 %) of these were found to be at high risk of a hereditary cancer syndrome, 102 (20.4 %) at moderate familial cancer risk, and 66 (13.2 %) at average risk. Three months following receipt of the risk result letter, nearly all respondents found the process at least somewhat helpful (98.4 %). All participants identified as high-risk were mailed a letter recommending genetic counseling and were provided appointment tools. After 1 year, only 13 (7.3 %) of 179 high risk respondents reported pursuit of recommended genetic counseling. Participants were willing to provide family history information for the purposes of risk assessment; however, few patients pursued recommended genetic services. This suggests that cancer family history registries are feasible and viable but that further research is needed to increase the uptake of genetic counseling.
authors.affiliation: Masonic Cancer Center, University of Minnesota, 420 Delaware Street SE, MMC 450, Minneapolis, MN, 55455, USA. baker603@umn.edu.|Division of Colon and Rectal Surgery, Department of Surgery, University of Minnesota, Minneapolis, MN, USA. baker603@umn.edu.
authors.forename: Kristin B
authors.identifier: 0000-0001-6455-9944
authors.initials: KB
authors.lastname: Niendorf
authors.affiliation: Division of Gynecologic Oncology, Department of Obstetrics, Gynecology and Women's Health, University of Minnesota, Minneapolis, MN, USA.
authors.forename: Melissa A
authors.initials: MA
authors.lastname: Geller
authors.affiliation: Masonic Cancer Center, University of Minnesota, 420 Delaware Street SE, MMC 450, Minneapolis, MN, 55455, USA.
authors.forename: Rachel Isaksson
authors.initials: RI
authors.lastname: Vogel
authors.affiliation: Division of Environmental Health Sciences, School of Public Health, University of Minnesota, Minneapolis, MN, USA.
authors.forename: Timothy R
authors.initials: TR
authors.lastname: Church
authors.affiliation: Minnesota Oncology, Woodbury, MN, USA.
authors.forename: Anna
authors.initials: A
authors.lastname: Leininger
authors.affiliation: Maternal-Fetal Medicine Center, Burnsville, MN, USA.
authors.forename: Angela
authors.initials: A
authors.lastname: Bakke
authors.affiliation: Division of Colon and Rectal Surgery, Department of Surgery, University of Minnesota, Minneapolis, MN, USA.
authors.forename: Robert D
authors.initials: RD
authors.lastname: Madoff
mesh_terms: D000368:Aged; D005260:Female; D005500:Follow-Up Studies; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D008910:Minnesota; D008957:Models, Genetic; D008962:Models, Theoretical; D009386:Neoplastic Syndromes, Hereditary / Q000235:genetics*; D012017:Referral and Consultation; D012042:Registries; D018570:Risk Assessment
keywords: Cancer; Familial; Family history; Genetic; Genetic counseling; Hereditary; Uptake