标题：Characteristics of Health Information Gatherers, Disseminators, and Blockers Within Families at Risk of Hereditary Cancer: Implications for Family Health Communication Interventions
摘要：Objectives. Given the importance of the dissemination of accurate family history to assess disease risk, we characterized the gatherers, disseminators, and blockers of health information within families at high genetic risk of cancer. Methods. A total of 5466 personal network members of 183 female participants of the Breast Imaging Study from 124 families with known mutations in the BRCA1/2 genes (associated with high risk of breast, ovarian, and other types of cancer) were identified by using the Colored Eco-Genetic Relationship Map (CEGRM). Hierarchical nonlinear models were fitted to characterize information gatherers, disseminators, and blockers. Results. Gatherers of information were more often female ( P < .001), parents ( P < .001), and emotional support providers ( P < .001). Disseminators were more likely female first- and second- degree relatives (both P < .001), family members in the older or same generation as the participant ( P < .001), those with a cancer history ( P < .001), and providers of emotional ( P < .001) or tangible support ( P < .001). Blockers tended to be spouses or partners ( P < .001) and male, first-degree relatives ( P < .001). Conclusions. Our results provide insight into which family members may, within a family-based intervention, effectively gather family risk information, disseminate information, and encourage discussions regarding shared family risk. Acquiring accurate information regarding familial disease risk is a key component of a proactive approach to health care. This information is needed both to permit an accurate risk assessment and to develop appropriate, cost-effective prevention and risk-reducing management strategies. 1 – 3 An increased disease risk based on family history has important implications for screening, 4 and often leads to intervention at an earlier age than usual, increased screening frequency, modified surveillance recommendations, and the possibility of referral for genetic services. Both behavioral and genetic risk factors tend to cluster within families, which suggests that personalized risk information may have implications for the entire family. 5 , 6 Consequently, family-based efforts to collect and disseminate accurate family health history and genetic risk information are warranted and require familial cooperation in the gathering and disseminating process, as well as in reducing barriers to information flow. Building upon the success of community-based interventions that utilize lay health advisors or peer leaders, 7 – 10 we hypothesized that family-based interventions may be more effective if a family leader is integrated into the intervention efforts. The challenge in developing these family-based approaches is identifying optimally positioned family members who can facilitate gathering and disseminating family health history and genetic risk information. Different family members may take on different roles related to gathering and disseminating information. For example, the risk dissemination literature suggests that women tend to take on the role of “kin-keepers,” 11 – 16 who help to maintain communication among family members, monitor family relationships, and facilitate contact among family members. 11 , 12 However, more specific information regarding the characteristics of these disseminators is warranted, because the current literature is sparse. Individuals with deleterious BRCA1/2 mutations are effective in disseminating risk information to both close and more distant family members. 14 , 17 – 19 There is evidence that genetic test results are disseminated to a large percentage ( > 75%) of at-risk family members. 20 – 22 In contrast, the literature suggests that the effectiveness of dissemination efforts in the context of common disease risk 23 or high-risk families with indeterminate genetic test results 14 , 24 (Ersig et al, unpublished data, 2009) is more limited; efforts to expand this reach are vital to successful proactive health care. Because families with known BRCA1/2 mutations have been relatively effective in disseminating family health history and genetic risk information, they provide an ideal model for identifying the individual and relational characteristics of those persons within the family who play important roles in gathering and disseminating family health information. 25 In the present study, we sought to identify the characteristics of (1) gatherers, (2) disseminators, and (3) blockers of health information flow within BRCA1/2 mutation-positive families. Knowledge regarding the characteristics of persons central to these processes should facilitate developing network-based interventions that use optimally positioned family lay health advisors. Additionally, characterizing the persons who impede the dissemination process will inform interventions that integrate blockers into the information transfer process.
