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 EcoGenetic 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 seconddegree 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).Correspondence should be sent to Laura M. Koehly, PhD, Building 31, Room B1B37D, 31 Center Drive-MSC 2073, Bethesda, MD 20892 (koehlyl@mail.nih. gov) Contributors All authors were part of team discussions leading to developing the research questions and the design and execution of this study. L. M. Koehly developed the specific hypotheses, analysis plan, and codebook for data construction; completed the analysis; and led the writing of the article. J. A. Peters and R. Kenen originated and published the CEGRM concept as a research assessment tool. J. A. Peters subsequently translated the concept into a clinical research protocol and conducted the participant interviews. L. M. Hoskins conducted participant interviews and coded responses. A. L. Ersig and N. R. Kuhn aided in developing the codebook for data construction and coded interview responses. J. T. Loud contributed to the design of the parent study, recruited study participants, and performed medical assessment within the study protocol. M. H. Greene contributed to the design and funding of the parent study. All authors contributed to the writing of the article.The views expressed in this article are those of the authors and do not necessarily reflect the official policy or position of the Department of Health and Human Services or the US government. NIH Public Access Author ManuscriptAm J Public Health. Author manuscript; available in PMC 2010 January 7. Conclusions-Our results provide insight into which family members may, within a familybased 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-r...

No abstract

No abstract

No abstract

Purpose Assessment of children’s anxiety in busy clinic settings is an important step in developing tailored interventions. This article describes the construct validation of the Children’s Anxiety Meter-State (CAM-S), a brief measure of state anxiety. Design and Methods Existing data were used to investigate the associations between child self-reports of anxiety, parent reports of child anxiety, and observed child distress during an intravenous procedure. Results Children’s (n = 421) CAM-S scores were significantly associated with all parent measures and observed distress ratings. Practice Implications Findings support the use of the CAM-S for assessment of child anxiety in clinical settings.

Purpose: Known and suspected mutation carriers for hereditary nonpolyposis colorectal cancer are advised to have colonoscopies every 1 to 2 years to detect colorectal cancer. Little is known about colonoscopy completion in families suspected of having hereditary nonpolyposis colorectal cancer but without identified mutations. Methods: This study examined the effect of communication and encouragement on colonoscopy in families with and without known mutations. Twenty-three respondents from 11 families with indeterminate genetic test results were matched with 23 respondents from 11 families with mutationpositive results. Hierarchical modeling examined the effects of relational characteristics on time since last colonoscopy in index cases and their first-degree relatives. Results: Nearly one fifth of respondents were not screening appropriately. Time since last screening did not differ according to family mutation status. However, respondents who communicated about risk and received encouragement to screen from a greater proportion of named family members, and those who had a greater proportion of named family members involved in both communication and encouragement were significantly more likely to have a shorter time interval since last colonoscopy. Conclusion: Identifying patterns of interaction within at-risk families, regardless of gene mutation status, may be one avenue for promoting screening adherence. Genet Med 2009:11(10):728 -734. Key Words: hereditary nonpolyposis colorectal cancer, cancer screening, communication, encouragement, indeterminate genetic test results Hereditary nonpolyposis colorectal cancer (HNPCC) is an inherited cancer susceptibility syndrome predisposing affected individuals to increased risks for colorectal cancer (CRC) as well as endometrial, ovarian, small intestine, and other cancers. Risk for HNPCC is evaluated based on clinical presentation, pathologic criteria, and family history. 1,2 Mutations in mismatch repair (MMR) genes are associated with HNPCC. Individuals carrying a MMR gene mutation have estimated lifetime risks of developing CRC as high as 69% in men and 52% in women. [3][4][5] Advances in mutation detection have dramatically improved during the last decade, with the identification of mutations within MMR genes associated with HNPCC improving from 50% 6 to estimates as high as 84%. 7 Even with this significant improvement in detecting disease-causing mutations, a proportion of individuals suspected of having HNPCC will receive indeterminate results. Indeterminate results occur when no mutation is present, current technology does not detect the mutation, or a mutation is present in a gene not yet known to be associated with HNPCC. 6 Failure to find a mutation in an index case does not eliminate the possibility of HNPCC nor does it decrease the associated cancer risks.Colonoscopy screening in individuals at risk for HNPCC prevents CRC and reduces associated deaths. Precancerous polyps associated with HNPCC develop earlier in life and progress more quickly to malignancy. ...

The theory of resilience and relational load was tested with 60 couples and their adolescent children (ages 11-18) with type I diabetes (T1D). The couples participated in a stress-inducing conversation task in their home, followed by a random assignment to a two-week intervention designed to increase their relationship maintenance. Before the intervention, stronger communal orientation predicted greater maintenance for husbands and wives, but maintenance only reduced T1D stress for wives. The wives' and adolescents' T1D stress were also correlated, but the husbands' T1D stress was not significantly associated with either of them. Better maintenance was associated with less conflict during couples' conversations. Maintenance was also directly associated with less perceived and physiological stress (cortisol) from the conversation. Finally, wives in the intervention reported the most thriving, communal orientation and the least loneliness. The intervention also reduced adolescents' general life stress, but it did not influence their T1D stress or thriving.

Background Parents often want to provide support to their children during medical procedures, but not all parents are effective in providing distraction after brief training. Objective The aim of this study was to investigate the effects of three doses of distraction intervention for children at high and medium risk for procedure-related distress. Methods Children undergoing scheduled intravenous insertions for diagnostic or treatment purposes and their parents participated. A computerized application, Children, Parents and Distraction, was used to predict distress risk. Doses of intervention were basic (parents trained on providing distraction), enhanced (basic training plus tailored instructions, environmental modifications, and support and guidance from the research assistant), and professional (a trained research assistant provided distraction). Outcome measures were Observational Scale of Behavioral Distress-Revised for behavioral distress, Oucher for self-reported pain, parent report of child distress, and salivary cortisol for physiological distress. Results A total of 574 children, ages 4–10, and their parents participated. The Children, Parents and Distraction predicted that the risk for distress was high for 156 children, medium for 372, and low for 46. Children predicted to have higher risk for distress displayed more behavioral distress (p < .01). Children in the medium-risk group who had the professional intervention displayed significantly less behavioral distress (p < .001). Children in the high-risk group tended to have less behavioral distress when receiving the professional intervention (p = .07). There were no significant group differences for self-report of pain, parent report of distress, or cortisol levels. Discussion Some parents may need additional training in providing distraction to their children during procedures, and some children at medium and high risk for distress may need professional support. Parents should be asked about their preferences in acting as the distraction coach and, if willing, be provided as much training and support as possible in the clinical situation.