Cognitive and emotional factors related to COVID-19 among high-risk ethnically diverse adults at the onset of the New York City outbreak: A cross-sectional survey.

A cross-sectional survey was conducted among high-risk, racially/ethnically diverse adults at the point in time when New York City (NYC) became the COVID-19 pandemic's global epicenter. The study objective was to assess the threat and coping appraisals (cognitive factors known to correspond with people's willingness to adopt behaviorally focused interventions) and levels of distress, anxiety, and intolerance for uncertainty (emotional factors). Survey respondents were recruited in April 2020 using an online survey with unpaid recruitment on the GetHealthyHeights.org community-oriented website. We also recruited participants that engaged in previous research studies to gain survey responses from community members at higher risk for COVID-19 complications due to comorbidities compared to the general population. Analysis was performed to test for differences in survey responses by comorbidities, age, race, ethnicity, and employment status. Results show that the devastating effects of the pandemic appear to have uniquely impacted minority respondents, who reported significantly higher levels of anxiety and were significantly more likely to report having little control over whether they will get COVID-19 compared with White/non-Hispanic respondents. Minority respondents also had significantly higher mean scores on the behaviorally focused dimension of the intolerance of uncertainty (IU) scale, which measures avoidance and paralysis in the face of uncertainty. In multivariate analysis, IU predicted anxiety levels, and this association was not mediated by cognitive factors (threat and coping appraisals). By conducting this survey early in the pandemic, our study uniquely evaluated cognitive and emotional factors among a racially/ethnically diverse group of NYC residents during the height of the COVID-19 pandemic. Our findings suggest the need to acknowledge the disparities that appear to exist in pandemic response and for culturally tailored messaging and interventions. Few studies have reported differences by race and ethnicity during pandemic exposure. Therefore, further research on factors that may influence pandemic response among minority populations is needed.

Trust and credibility of information sources related to COVID-19 among high-risk ethnically diverse adults at the onset of the New York City outbreak: A cross-sectional survey conducted via a community health portal.

In March 2020, days after New York shut down to mitigate the spread of COVID-19, we developed a cross-sectional, participant-administered electronic survey to explore how New Yorkers were impacted by and were responding to the ongoing crisis. A critical component of the survey was to assess how credible and trustworthy respondents found various information sources. To advertise and distribute the survey, we embedded an invitation to participate using a popup on the GetHealthyHeights.org website. GetHealthyHeights was designed using community-based participatory research for the medically-underserved, urban, and largely Latinx community of Washington Heights-Inwood, New York City. We received 321 responses from April through July 2020. Participant ages ranged from 25 to 87, and 25% were Latinx. Results showed that the choice of and trust in different COVID-19 information sources were observed to be significantly different across demographic variables, including gender, age, race, and chronic health conditions. In the domains of trust and information source credibility, designers should account for perspectives of diverse subgroups.

Study protocol: Randomized controlled trial of web-based decision support tools for high-risk women and healthcare providers to increase breast cancer chemoprevention.

BACKGROUND: Chemoprevention using selective estrogen receptor modulators and aromatase inhibitors has been shown to reduce invasive breast cancer incidence in high-risk women. Despite this evidence, few high-risk women who are eligible for chemoprevention utilize it as a risk-reducing strategy. Reasons for low uptake include inadequate knowledge about chemoprevention among patients and healthcare providers, concerns about side effects, time constraints during the clinical encounter, and competing comorbidities. METHODS/DESIGN: We describe the study design of a randomized controlled trial examining the effect of two web-based decision support tools on chemoprevention decision antecedents and quality, referral for specialized counseling, and chemoprevention uptake among women at an increased risk for breast cancer. The trial is being conducted at a large, urban medical center. A total of 300 patients and 50 healthcare providers will be recruited and randomized to standard educational materials alone or in combination with the decision support tools. Patient reported outcomes will be assessed at baseline, one and six months after randomization, and after their clinic visit with their healthcare provider. DISCUSSION: We are conducting this trial to provide evidence on how best to support personalized breast cancer risk assessment and informed and shared decision-making for chemoprevention. We propose to integrate the decision support tools into clinical workflow, which can potentially expand quality decision-making and chemoprevention uptake. TRIAL REGISTRATION: NCT03069742.

Response Rates of Medical Providers to Internet Surveys Regarding Their Adoption of Preexposure Prophylaxis for HIV: Methodological Implications.

In 2016 to 2017, we surveyed primary care providers (PCPs) in upper Manhattan and the South Bronx, New York, on their knowledge, attitudes, and practices surrounding preexposure prophylaxis (PrEP) for HIV. Despite efforts to promote survey response, we were only able to obtain a meager response rate, limiting our ability to interpret results. In this short communication, we examine our survey's methodology, as well as the methods used by other similar studies, in order to suggest how certain strategies appear to influence PCP response to PrEP surveys. Administering the survey in a variety of modes, sampling from a professional organization's listserv, promoting the survey topic's relevance to potential participants, and offering monetary incentives to each survey respondent all appear to be promising strategies for increasing response rates in PrEP provider surveys.

Study protocol: a cluster randomized controlled trial of web-based decision support tools for increasing BRCA1/2 genetic counseling referral in primary care.

BACKGROUND: BRCA1 and BRCA2 mutations confer a substantial breast risk of developing breast cancer to those who carry them. For this reason, the United States Preventative Services Task Force (USPSTF) has recommended that all women be screened in the primary care setting for a family history indicative of a mutation, and women with strong family histories of breast or ovarian cancer be referred to genetic counseling. However, few high-risk women are being routinely screened and fewer are referred to genetic counseling. To address this need we have developed two decision support tools that are integrated into clinical care. METHOD: This study is a cluster randomized controlled trial of high-risk patients and their health care providers. Patient-provider dyads will be randomized to receive either standard education that is supplemented with the patient-facing decision aid, RealRisks, and the provider-facing Breast Cancer Risk Navigation Toolbox (BNAV) or standard education alone. We will assess these tools' effectiveness in promoting genetic counseling uptake and informed and shared decision making about genetic testing. DISCUSSION: If found to be effective, these tools can help integrate genomic risk assessment into primary care and, ultimately, help expand access to risk-appropriate breast cancer prevention options to a broader population of high-risk women. TRIAL REGISTRATION: This trial is retrospectively registered with ClinicalTrials.gov Identifier: NCT03470402 : 20 March 2018.

An Applied Framework in Support of Shared Decision Making about BRCA Genetic Testing.

The United States Preventive Services Taskforce recommends that primary care providers screen patients for an increased risk of carrying a BRCA1 or BRCA2 mutation and refer those who meet family history criteria to genetic counseling. Such screening requires detailed and accurate family history data, which often goes uncollected during a primary care visit due to time constraints, competing priorities, and lack of awareness on behalf of both patients and providers. In order to address these barriers and promote appropriate genetic counseling referral, we developed a user-centered framework that collects and communicates relevant data in order to prepare patients and their primary care providers for an informed discussion on genetic counseling referral. This paper describes this framework and the underlining data schema that makes it possible.

Automatic Genetic Risk Assessment Calculation Using Breast Cancer Family History Data from the EHR compared to Self-Report.

Genetic testing is a method to assess hereditary cancer risk. However, it is under-utilized and various methods of family history intake have been evaluated in previous studies. The six-point-scale (SPS) is a validated family history screener that is used to determine eligibility for BRCA genetic counseling. We automated the calculation of the SPS score using structured family history data along with free text from the electronic health record (EHR) to detect detailed family history information of breast cancer. We extracted data for all women aged 35 to 74 who had screening mammography at Columbia University Medical Center (CUMC) from January 2015 to May 2017 (N=37,596). After we calculated SPS scores using structured and free-text EHR data, we compared the results with SPS score calculated from a baseline survey conducted for a prospective study called Know Your Risks: Assessment at Screening (KYRAS). Among 1,202 patients with EHR structured family history data, we found 1.43% had an SPS score of 6 higher which meets criteria for genetic counseling referral, while 12.05% of the survey respondents had SPS score of 6 or higher. Results show there is a need for more efficient methods to identify patients eligible for genetic counseling through EHR analysis.