title: Large, Prospective Analysis of the Reasons Patients Do Not Pursue BRCA Genetic Testing Following Genetic Counseling.
abstract: Genetic counseling (GC) and genetic testing (GT) identifies high-risk individuals who benefit from enhanced medical management. Not all individuals undergo GT following GC and understanding the reasons why can impact clinical efficiency, reduce GT costs through appropriate identification of high-risk individuals, and demonstrate the value of pre-GT GC. A collaborative project sponsored by the Michigan Department of Health and Human Services prospectively collects anonymous data on BRCA-related GC visits performed by providers in Michigan, including demographics, patient/family cancer history, GT results, and reasons for declining GT. From 2008 to 2012, 10,726 patients underwent GC; 3476 (32.4%) did not pursue GT. Primary reasons included: not the best test candidate (28.1%), not clinically indicated (23.3%), and insurance/out of pocket cost concerns (13.6%). Patient disinterest was the primary reason for declining in 17.1%. Insurance/out of pocket cost concerns were the primary reason for not testing in 13.4% of untested individuals with private insurance. Among untested individuals with breast and/or ovarian cancer, 22.5% reported insurance/out of pocket cost concerns as the primary reason for not testing and 6.6% failed to meet Medicare criteria. In a five-year time period, nearly one-third of patients who underwent BRCA GC did not pursue GT. GT was not indicated in almost half of patients. Insurance/out of pocket cost concerns continue to be barriers.
authors.affiliation: Saint Joseph Mercy Hospital, Ann Arbor, MI, USA.
authors.forename: Sommer
authors.initials: S
authors.lastname: Hayden
authors.affiliation: Michigan Department of Health and Human Services, Lansing, MI, USA.
authors.forename: Sarah
authors.initials: S
authors.lastname: Mange
authors.affiliation: Michigan Department of Health and Human Services, Lansing, MI, USA.
authors.forename: Debra
authors.initials: D
authors.lastname: Duquette
authors.affiliation: Barbara Ann Karmanos Cancer Institute, Detroit, MI, USA.
authors.forename: Nancie
authors.initials: N
authors.lastname: Petrucelli
authors.affiliation: University of Michigan Health System, 300 North Ingalls, NI3 A08, Ann Arbor, MI, 48109-5419, USA. vmraymond@gmail.com.
authors.forename: Victoria M
authors.initials: VM
authors.lastname: Raymond
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics*; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000191:economics* / Q000523:psychology*; D005820:Genetic Testing; D006801:Humans; D008824:Michigan; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics*; D010342:Patient Acceptance of Health Care; D011446:Prospective Studies
keywords: BRCA; Barriers; Genetic Counseling; Genetic Testing; Insurance; Public Health