Aim: Among mothers undergoing BRCA1/2 testing and their spouses/partners, this study sought to examine decision support needs and motivations for family communication of genetic risk information to asymptomatic children. Methods: This study gathered data from 213 tested mothers and 104 of their untested parenting partners 1 month after maternal receipt of genetic test results and upon making a decision about communicating genetic information to their child (ages 8-21 years). Data include parents' perceived needs for family communication decision support, decision motivations, and parent-child communication. Results: Parents reported high decision support needs (e.g., educational materials, professional counseling, peer assistance). Motivations for disclosure to children among mothers and partners focused on promoting the parent-child bond and maintaining family health (55.3% and 75%, respectively) and promoting positive child affect (44.7% and 25.5%, respectively). Motivations for nondisclosure to children among mothers and partners focused on the lack of appropriateness (69.6% and 51.3%, respectively) and relative importance of genetic test results (30.4% and 48.7%, respectively). Significant discrepancies in parental motivation for family communication were observed. Decision support needs were highest among disclosing mothers with affect-related motivations [t (129) = 2.47; p = 0.01]. Parentchild communication was poorest among nondisclosing mothers concerned about the appropriateness of genetic information for their child [t (77) = -3.29; p = .002]. Conclusions: Parents receiving information about hereditary cancer predisposition have unmet needs when making decisions about disclosing genetic risk information to their asymptomatic children. These data can guide the development of cancer risk communication decision support interventions for parents undergoing such testing. IntroductionC ommunicating information about genetic conditions to family members can be a complex and emotionally charged process (Tercyak et al., 2001;Tercyak et al., 2002;Forrest et al., 2003;Gallo et al., 2005). Decisions about communicating genetic risk information to children presents parents with special challenges, including whether, when, and how to disclose information to the child; what to disclose; and anticipation of how the child may react (Gallo et al., 2005). This is especially true for asymptomatic children who may be at risk for adult-onset disease. Under these circumstances, the child's disease risk is not yet known and genetic testing of children is not recommended or considered to be appropriate (Malpas 2006). However, parents often feel compelled to share genetic risk information with their children (Forrest et al., 2003;Hallowell et al., 2005;Metcalfe et al., 2008) and face uncertainty when considering disclosure, including whether the child is adequately prepared to comprehend complex risk information, the consequences for the child's future, and the possible negative effect of disclosure on child adjustment and fami...

Background Hereditary breast and ovarian cancer risk assessments (CRAs) are underutilized by low-income and racial/ethnic minority women, potentially exacerbating cancer-related disparities observed within these populations. We deployed and evaluated a systems-level intervention designed to identify patients potentially at-risk for hereditary breast/ovarian cancer, refer them for CRAs, and facilitate CRA utilization at an urban community-based breast health care center. Methods Cancer family history forms were completed by patients seen at the center during an 18-month period and reviewed by staff for CRA eligibility against published referral criteria. A patient navigator educated eligible patients about the benefits of CRA, navigating interested patients to this service. CRA-specific patient interest and utilization outcomes are reported. Results In total, 94.7% of all patients (n = 2,436) completed forms and 65 patients (2.7%) met CRA eligibility criteria. Most eligible patients (72.3%) were interested in CRA. Interested patients had a greater risk for hereditary breast/ovarian cancer (i.e., more affected relatives, greater objective risk scores) than uninterested patients: 57.4% scheduled a CRA appointment and 51.9% of scheduled patients utilized CRAs. Patients scheduling a CRA were contacted in less time and required fewer follow-up contacts by the patient navigator, and were more likely to be African American, than those who declined a CRA or were lost to follow-up (all p’s ≤ .05). Conclusions The systems-level intervention successfully identified patients eligible for CRA and linked interested and at-risk patients with CRA resources. More intensive patient navigation addressing the unique barriers encountered within this population may be required to enhance utilization.

BackgroundSpouses and partners (“partners”) of women at-risk for (“previvors”) and surviving with hereditary breast/ovarian cancer are a primary source of support within their families. Yet, little is known about partners’ needs for psychoeducational intervention to enhance their cancer risk knowledge, coping, and support role functioning.ObjectiveTo determine the type and range of need for psychoeducational intervention among partners of hereditary breast cancer previving and surviving women, and to understand the potential role of the Internet and other communication channels in meeting that need.MethodsWe conducted a secondary data analysis on partners’ needs that were originally assessed via an online community-based organization devoted to hereditary breast cancer. Partners’ demographic characteristics, need for psychoeducation, and likelihood of using various communication channels were assessed along with other constructs. Analyses examined commonly-occurring clusters of likely intervention use and by communication channel.ResultsPartners (n =143) endorsed a moderately high level of need for psychoeducation and did so across multiple content areas (e.g., role functioning, decision making, communication, intimacy). Factor analysis identified three commonly-preferred communication channels: 1) self-help materials, 2) online interactions, and 3) interpersonal interactions. A cluster analysis among these factors identified three groups of partners based on their likelihood of psychoeducational intervention use (low [18%], moderate [55%], and high [27%] users). In a covariate-adjusted MANOVA, moderate and high intervention users reported significantly greater need for psychoeducation compared to low users (F2,132 = 9.15, P < .001).ConclusionsA majority of assessed partners perceived a need for psychoeducational interventions surrounding hereditary breast cancer risk. Internet-based, interactive resources may be an efficient mechanism to reach large numbers of partners with tailored content. Research is warranted to inform the design and deployment of these resources to ensure quality and high impact, and ultimately to examine ways to integrate these resources into clinical care.

It has been well-established that some adolescents diagnosed with attention-deficit/hyperactivity disorder (ADHD) are at increased risk for cigarette smoking. Current research on the genetic basis of this association could ultimately translate into genetic tests capable of identifying smoking-prone adolescents with ADHD. In this study we examined 81 ADHD affected adolescents’ (age 13–21) interest in genetic testing for nicotine addiction susceptibility. Fifty-seven percent of adolescents indicated a fair amount of interest or more in testing. Most adolescents indicated that the personal information revealed from testing would be either useful (29%) or interesting (37%). Implications for genetically-informed smoking prevention and cessation interventions in high risk adolescents with ADHD are discussed.

This study examined factors associated with teens’ adherence to a multiple health behavior cancer preventive intervention. Analyses identified predictors of trial enrollment, run-in completion, and adherence (intervention initiation, number of sessions completed). Of 104 teens screened, 73% (n = 76) were trial-eligible. White teens were more likely to enroll than non-whites (χ2 [1] df = 4.49, p = 0.04). Among enrolled teens, 76% (n = 50) completed the run-in; there were no differences between run-in completers and non-completers. A majority of run-in completers (70%, n = 35) initiated the intervention, though teens who initiated the intervention were significantly younger than those who did not (p < 0.05). The mean number of sessions completed was 5.7 (SD = 2.6; maximum = 8). After adjusting for age, teens with poorer session engagement (e.g., less cooperative) completed fewer sessions (B = -1.97, p = 0.003, R2 = 0.24). Implications for adolescent cancer prevention research are discussed.