title: Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children.
abstract: Mothers who participate in genetic testing for hereditary breast/ovarian cancer risk must decide if, when, and how to ultimately share their BRCA1 and BRCA2 (BRCA1/2) test results with their minor-age children. One of the primary aides for mothers in making this decision is cancer genetic counseling. However, counseling is limited in how well it can educate mothers about such decisions without the availability of resources that are specific to family communication and genetic testing per se. In an effort to fill this gap and identify mothers most likely to benefit from such resources, surveys were conducted with 187 mothers undergoing BRCA1/2 testing who had children 8-21 years old. Data were collected weeks after genetic testing but prior to mothers' learning of their test results; quantitative assessments of informational resource needs (i.e., speaking with previous BRCA1/2 testing participants who are parents regarding their experiences, reading educational literature about options and what to expect, speaking with a family counselor, attending a family support group, and self-nominated other resources), testing motivations, decision making vigilance, and decisional conflict regarding communicating test results to children were included. Mothers' most-to-least frequently cited information resource needs were: literature (93.4%), family counseling (85.8%), prior participants (79.0%), support groups (53.9%), and other (28.9%; e.g., pediatricians and psychologists). Seventy-eight percent of mothers were interested in accessing three or more resources. In multivariate regression analyses, testing motivations (beta = 0.35, p = 0.03), decision-making vigilance (beta = 0.16, p = 0.00), and decisional conflict (beta = 0.10, p = 0.00) were associated with mothers' need level; mothers with a greater interest in testing to learn about their children's risks, those with more vigilant decision-making styles, and those with higher decisional conflict had the greatest need. In conjunction with enhanced genetic counseling focusing on family disclosure, educational literature, and psychosocial support may promote improved outcomes.
authors.affiliation: Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC 20007-2401, USA. tercyakk@georgetown.edu
authors.forename: Kenneth P
authors.initials: KP
authors.lastname: Tercyak
authors.forename: Beth N
authors.initials: BN
authors.lastname: Peshkin
authors.forename: Tiffani A
authors.initials: TA
authors.lastname: Demarco
authors.forename: Andrea Farkas
authors.initials: AF
authors.lastname: Patenaude
authors.forename: Katherine A
authors.initials: KA
authors.lastname: Schneider
authors.forename: Judy E
authors.initials: JE
authors.lastname: Garber
authors.forename: Heiddis B
authors.initials: HB
authors.lastname: Valdimarsdottir
authors.forename: Marc D
authors.initials: MD
authors.lastname: Schwartz
mesh_terms: D000293:Adolescent; D000328:Adult; D019313:BRCA1 Protein / Q000235:genetics; D024682:BRCA2 Protein / Q000235:genetics; D001943:Breast Neoplasms / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D002648:Child; D003657:Decision Making; D003710:Demography; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D007258:Informed Consent; D008875:Middle Aged; D009035:Mothers; D009154:Mutation
chemical_list: D019313:BRCA1 Protein; D024682:BRCA2 Protein