Genetic counselor roles in the undiagnosed diseases network research study: Clinical care, collaboration, and curation.

Genetic counselors (GCs) are increasingly filling important positions on research study teams, but there is limited literature describing the roles of GCs in these settings. GCs on the Undiagnosed Diseases Network (UDN) study team serve in a variety of roles across the research network and provide an opportunity to better understand genetic counselor roles in research. To quantitatively characterize the tasks regularly performed and professional fulfillment derived from these tasks, two surveys were administered to UDN GCs in a stepwise fashion. Responses from the first, free-response survey elicited the scope of tasks which informed development of a second structured, multiple-select survey. In survey 2, respondents were asked to select which roles they performed. Across 19 respondents, roles in survey 2 received a total of 947 selections averaging approximately 10 selections per role. When asked to indicate what roles they performed, respondent selected a mean of 50 roles (range 22-70). Survey 2 data were analyzed via thematic coding of responses and hierarchical cluster analysis to identify patterns in responses. From the thematic analysis, 20 non-overlapping codes emerged in seven categories: clinical interaction and care, communication, curation, leadership, participant management, research, and team management. Three themes emerged from the categories that represented the roles of GCs in the UDN: clinical care, collaboration, and curation. Cluster analyses showed that responses were more similar among individuals at the same institution than between institutions. This study highlights the ways GCs apply their unique skill set in the context of a clinical translational research network. Additionally, findings from this study reinforce the wide applicability of core skills that are part of genetic counseling training. Clinical literacy, genomics expertise and analysis, interpersonal, psychosocial and counseling skills, education, professional practice skills, and an understanding of research processes make genetic counselors well suited for such roles and poised to positively impact research experiences and outcomes for participants.

Self-Reported Behavior Change and Predictors of Engagement With a Multidomain Brain Health Intervention for Midlife and Older Adults: A Pilot Clinical Trial.

OBJECTIVES: This study evaluated the efficacy of a multidomain brain health intervention on health behavior change and sought to understand whether health literacy or brain health knowledge predicted engagement with the intervention. METHODS: One-hundred thirty midlife and older adults were assigned to one of three intervention conditions: brain fitness (B-Fit) utilizing education and goal setting, education-only, or waitlist. Questionnaires were completed at baseline and post-intervention. RESULTS: Both B-Fit and education-only conditions reported improvements in health behaviors over time. Although effect size for the education-only condition was moderate, only the B-Fit condition differed significantly in health behaviors from the waitlist post-intervention. Lower baseline brain health knowledge predicted improvements in health behaviors for education-only condition. DISCUSSION: The multidomain brain health intervention was successful in helping participants change their behaviors, but it was not more effective than the education-only condition. For those with lower brain health knowledge, an education-only intervention may be sufficient to encourage behavior change.

The Familial Socialization of Culturally Related Values in Mexican American Families.

Research has documented a relation between parents' ethnic socialization and youth's ethnic identity, yet there has been little research examining the transmission of cultural values from parents to their children through ethnic socialization and ethnic identity. This study examines a prospective model in which mothers' and fathers' Mexican American values and ethnic socialization efforts are linked to their children's ethnic identity and Mexican American values, in a sample of 750 families (including 467 two-parent families) from an ongoing longitudinal study of Mexican American families (Roosa, Liu, Torres, Gonzales, Knight, & Saenz, 2008). Findings indicated that the socialization of Mexican American values was primarily a function of mothers' Mexican American values and ethnic socialization, and that mothers' Mexican American values were longitudinally related to children's Mexican American values. Finally, these associations were consistent across gender and nativity groups.

Management of hyperbilirubinemia in newborns: measuring performance by using a benchmarking model.

BACKGROUND: Accreditors hold hospitals accountable for harm from serious newborn hyperbilirubinemia, yet standards for evaluating performance in prevention are lacking. OBJECTIVE: We confirmed prognostic variables for newborn hyperbilirubinemia and developed a benchmarking model for self-evaluation of hyperbilirubinemia management. METHODS: We conducted a 3-year prospective cohort study in the Henry Ford Health System (HFHS) on 5507 healthy newborns of >or=35 weeks' gestational age. HFHS follows a rigorous protocol for hyperbilirubinemia management. Defining hyperbilirubinemia as age-specific levels of total serum bilirubin exceeding American Academy of Pediatrics criteria for considering phototherapy and severe hyperbilirubinemia as total serum bilirubin >or=20 mg/dL, we used logistic and Poisson regressions to determine predictors and estimate parameters for a benchmarking model. We compared incidence rates for severe hyperbilirubinemia from HFHS to aggregate data from 11 hospitals reported to have less rigorous management. RESULTS: Newborns were 52.9% black, 14.4% white, 24.3% Latino, and 2.4% Asian; 30% were exclusively and 28% partially breastfed. Regression analyses revealed associations for hyperbilirubinemia and severe hyperbilirubinemia with black mothers (negative) and exclusive or partial breastfeeding and younger gestational age (positive). Male newborns and older mothers were also associated with severe hyperbilirubinemia. For all 5 variables, we found a lower risk for severe hyperbilirubinemia at HFHS than in the comparison hospital group. To compare hospitals, we developed a benchmarking model for incidence of hyperbilirubinemia adjusting for race, feeding method, and gestational age. CONCLUSIONS: Hospitals with access to newborns' inpatient and postdischarge data can use our benchmarking model to compare their management of hyperbilirubinemia with a reference population that received rigorous care.