"It's not like judgment day": public understanding of and reactions to personalized genomic risk information.

The value of genomic risk assessment depends upon patients making appropriate behavioral changes in response to increased risk leading to disease prevention and early detection. To date, few studies have investigated consumers' response to personalized genomic disease risk information. To address this gap, we conducted semi-structured interviews with 60 adults participating in the Coriell Personalized Medicine Collaborative. The interviews took place after receiving results providing genomic and other risk information for up to eight common complex diseases. We found that participants were most likely to recall results which conferred an increased risk or those of particular personal interest. Participants understood the multi-factorial nature of common complex disease, and generally did not have negative emotional responses or overly deterministic perceptions of their results. Although most participants expressed a desire to use results to improve their health, a minority had actually taken action (behavior change or shared results with their doctor) at the time of the interview. These results suggest that participants have a reasonable understanding of genomic risk information and that provision of genomic risk information may motivate behavior change in some individuals; however additional work is needed to better understand the lack of change seen in the majority of participants.

Examining the association between possessing a regular source of healthcare and adherence with cancer screenings among Haitian households in Little Haiti, Miami-Dade County, Florida.

Immigrant minorities regularly experience higher incidence and mortality rates of cancer. Frequently, a variety of social determinants create obstacles for those individuals to get the screenings they need. This is especially true for Haitian immigrants, a particularly vulnerable immigrant population in South Florida, who have been identified as having low cancer screening rates. While Haitian immigrants have some of the lowest cancer screening rates in the country, there is little existing literature that addresses barriers to cancer screenings among the population of Little Haiti in Miami-Dade County, Florida. The objective of this study was to evaluate the association between having a regular source of healthcare and adherence to recommended cancer screenings in the Little Haiti population of Miami.This secondary analysis utilized data collected from a random-sample, population-based household survey conducted from November 2011 to December 2012 among a geographic area approximating Little Haiti in Miami-Dade County, Florida. A total of 421 households identified as Haitian. The main exposure of interest was whether households possessed a regular source of care. Three separate outcomes were considered: adherence with colorectal cancer screening, mammogram adherence, and Pap smear adherence. Analysis was limited to households who met the age criteria for each outcome of interest. Bivariate associations were examined using the chi square test and Fisher exact test. Binary logistic regression was used to estimate unadjusted and adjusted odds ratios (ORs) with 95% confidence intervals (CIs).After adjusting for the head of household's education and household insurance status, households without a regular source of care were significantly less likely to adhere with colorectal cancer screening (OR = 0.33; 95% CI: 0.14-0.80) or mammograms (OR = 0.28; 95% CI: 0.11-0.75). Households with insurance coverage gaps were significantly less likely to adhere with mammograms (OR = 0.40; 95% CI: 0.17-0.97) or Pap smears (OR = 0.28; 95% CI: 0.13-0.58).Our study explored adherence with multiple cancer screenings. We found a strong association between possessing a regular source of care and adherence with colorectal cancer screening and mammogram adherence. Targeted approaches to improving access to regular care may improve adherence to cancer screening adherence among this unique immigrant population.

Generating hypotheses about care needs of high utilizers: lessons from patient interviews.

Informed by a largely secondary and quantitative literature, efforts to improve care and outcomes for complex patients with high levels of emergency and hospital-based health care utilization have offered mixed results. This qualitative study identifies psychosocial factors and life experiences described by these patients that may be important to their care needs. Semi-structured interviews were conducted with 19 patients of the Camden Coalition of Healthcare Providers' Care Management Team. Investigators coded transcripts using a priori and inductively-derived codes, then identified 3 key themes: (1) Early-life instability and traumas, including parental loss, unstable or violent relationships, and transiency, informed many participants' health and health care experiences; (2) Many "high utilizers" described a history of difficult interactions with health care providers during adulthood; (3) Over half of the participants described the importance to their well-being of positive and "caring" relationships with primary health care providers and the outreach team. Additionally, the transient and vulnerable nature of this complex population posed challenges to follow-up, both for research and care delivery. These themes illuminate potentially important hypotheses to be explored in more generalizable samples using robust and longitudinal methods. Future work should explore the prevalence and impact of adverse childhood experiences among "high utilizers," and the different types of relationships they have with providers. Investigators should test new modes of care delivery that attend to patients' trauma histories. This qualitative study was well suited to provide insight into the life stories of these complex, vulnerable patients, informing research questions for further investigation.