Purpose: There is limited research on the relationship between structural environmental factors and genomics-related knowledge, self-efficacy, perceived importance, and communication. We examined the potential impact of racial segregation on these genomics-related outcomes among medically underserved patients.
Methods: We analyzed data from a sample of 546 patients recruited from a primary care clinic in St.
Purpose: The GARDE platform uses family history reported in the electronic health record (EHR) to systematically identify eligible patients for genetic testing for hereditary cancer syndromes. The goal of this study was to evaluate the change in effectiveness of GARDE to identify eligible individuals when more comprehensive family history data are provided, thus quantifying the impact of underdocumentation.
Methods: A cohort of 133,764 patients at the University of Utah Health was analyzed with GARDE comparing identification rates using EHR data versus EHR plus data from a statewide population database, the Utah Population Database (UPDB).
Background: Addressing the increasing incidence of skin cancer among young adults is a priority. The objective of the Risk Information and Skin-cancer Education for Undergraduate Prevention (RISE-UP) study is to identify personalized intervention components to prevent sunburn, a clinically significant outcome highly associated with skin cancer, in college students.
Methods: Guided by the Elaboration Likelihood Model, the study will use Multiphase Optimization Strategy (MOST) methodology to test three intervention components (ultraviolet photography, MC1R genetic testing, and action planning) each with two levels (yes v.
Some genetic counselors (GCs) may find theories, models, and frameworks (TMFs) useful in clinical skills selection and when reflecting on or evaluating genetic counseling practice. This paper aims to demonstrate how TMFs can be used to postulate how different skills may impact patients'/clients' decisions, behaviors, and outcomes and consider how multiple TMFs can inform the use of various skills or strategies to achieve different goals. Additionally, we provide examples of TMFs that may help GCs in nonclinical aspects of their work, such as implementing and evaluating new interventions or service delivery models.
View Article and Find Full Text PDFBackground: We examined neighborhood characteristics concerning breast cancer screening annual adherence during the COVID-19 pandemic.
Methods: We analyzed 6673 female patients aged 40 or older at increased inherited cancer risk in 2 large health care systems (NYU Langone Health [NYULH] and the University of Utah Health [UHealth]). Multinomial models were used to identify predictors of mammogram screening groups (non-adherent, pre-pandemic adherent, pandemic period adherent) in comparison to adherent females.
Interventions designed to address COVID-19 needed to be rapidly scaled up to the population level, and to address health equity by reaching historically marginalized populations most affected by the pandemic (e.g., racial/ethnic minorities and rural and low socioeconomic status populations).
View Article and Find Full Text PDFObjective: Examine decision-making regarding when women would prefer to receive reproductive carrier and cancer predisposition screening and from what clinician.
Methods: 20 women completed in-depth interviews via Zoom exploring their views on the provision of reproductive carrier and cancer predisposition screening. Our analysis identified themes related to what informs women's preferences for when they would like to receive a genetic screening offer and by which clinician.
Objective: To characterize inaccurate and accurate beliefs about cancer risk factors held among Spanish-preferring adults in the United States.
Methods: From a national probability panel, we surveyed 196 Hispanic adults who prefer completing questionnaires in Spanish. We also used data from a representative sample of 1200 adults in the US to compare belief acceptance.
Background: The growing demand for genomic testing and limited access to experts necessitate innovative service models. While chatbots have shown promise in supporting genomic services like pre-test counseling, their use in returning positive genetic results, especially using the more recent large language models (LLMs) remains unexplored.
Objective: This study reports the prompt engineering process and intrinsic evaluation of the LLM component of a chatbot designed to support returning positive population-wide genomic screening results.
Objective: To analyze the relationship between perceived discrimination over the life course, social status, and limited health literacy (HL).
Methods: 5040 adults who participated in the 2023 Survey of Racism and Public Health. We applied stratified multilevel models adjusted for sociodemographic characteristics.
Importance: Increasing numbers of unaffected individuals could benefit from genetic evaluation for inherited cancer susceptibility. Automated conversational agents (ie, chatbots) are being developed for cancer genetics contexts; however, randomized comparisons with standard of care (SOC) are needed.
Objective: To examine whether chatbot and SOC approaches are equivalent in completion of pretest cancer genetic services and genetic testing.
Background: Research is needed to understand the impact of social determinants of health on health literacy throughout the life course. This study examined how racial composition of multiple past and current social environments was related to adults' health literacy.
Methods: In this study, 546 adult patients at a primary care clinic in St.
Background: Studies investigating the impact of racial segregation on health have reported mixed findings and tended to focus on the racial composition of neighborhoods. These studies use varying racial composition measures, such as census data or investigator-adapted questions, which are currently limited to assessing one dimension of neighborhood racial composition.
Objective: This study aims to develop and validate a novel racial segregation measure, the Pictorial Racial Composition Measure (PRCM).
Background: Individuals with high risk for lung cancer may benefit from lung cancer screening, but there are associated risks as well as benefits. Shared decision-making (SDM) tools with personalized information may provide key support for patients. Understanding patient perspectives on educational tools to facilitate SDM for lung cancer screening may support tool development.
View Article and Find Full Text PDFCascade testing is an imperative process to engage Lynch syndrome patients' at-risk relatives in early cancer risk reduction interventions. How genetic counselors communicate about cascade testing is crucial to patients' intentions of and actual involvement in family communication. Based on data from 20 interviews with genetic counselors, this qualitative study examined their perceptions of barriers and facilitators of offering cascade testing to at-risk relatives and the specific communication strategies they use to discuss cascade testing with patients.
View Article and Find Full Text PDFPurpose: Genetic testing for gene mutations which elevate risk for breast cancer is particularly important for women diagnosed at a young age. Differences remain in access and utilization to testing across social groups, and research on the predictors of interest in genetic testing for women diagnosed at a young age is limited.
Methods: We examined the relationships between subjective social status (SSS) and variables previously identified as possible predictors of genetic testing, including genome sequencing knowledge, genetic worry, cancer worry, health consciousness, decision-making preferences, genetic self-efficacy, genetic-related beliefs, and subjective numeracy, among a cohort of women who were diagnosed with breast cancer at a young age.
BMJ Open
April 2024
Introduction: In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA.
View Article and Find Full Text PDFBackground: Lynch Syndrome is among the most common hereditary cancer syndromes and requires ongoing cancer surveillance, repeated screenings and potential risk-reducing surgeries. Despite the importance of continued surveillance, there is limited understanding of patient experiences after initial testing and counseling, the barriers or facilitators they experience adhering to recommendations, and how they want to receive information over time.
Methods: A cross-sectional, observational study was conducted among 127 probands and family members who had received genetic testing for Lynch Syndrome.
J Biomed Inform
January 2024
Objective: This study aimed to 1) investigate algorithm enhancements for identifying patients eligible for genetic testing of hereditary cancer syndromes using family history data from electronic health records (EHRs); and 2) assess their impact on relative differences across sex, race, ethnicity, and language preference.
Materials And Methods: The study used EHR data from a tertiary academic medical center. A baseline rule-base algorithm, relying on structured family history data (structured data; SD), was enhanced using a natural language processing (NLP) component and a relaxed criteria algorithm (partial match [PM]).
Contracting is a skill used by genetic counselors (GCs) to establish a shared vision for the session. Ensuring that patients and GCs are aligned on expectations for the encounter allows GCs to meet patient needs and support patient autonomy. Although contracting is described in the practice-based competencies (PBCs), the process has not been systematically observed in practice.
View Article and Find Full Text PDFObjective: To evaluate a health system-wide intervention distributing free home-disposal bags to surgery patients prescribed opioids.
Data Sources And Study Setting: We collected patient surveys and electronic medical record data at an academic health system.
Study Design: We conducted a prospective observational study.
Public Health Genomics
December 2023
Genetic testing (GT) has become ubiquitous in the United States, either in clinical or direct-to-consumer markets. White and English-speaking populations have primarily benefited from this new technology, leaving other groups, like Hispanic populations, behind. Explanations for this disparity has cited a lack of awareness and knowledge of genetic testing purposes.
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