Publications by authors named "Megan C Roberts"

49 Publications

Predictors of Chronic Opioid Use: A Population-level Analysis of North Carolina Cancer Survivors Using Multi-Payer Claims.

J Natl Cancer Inst 2021 Apr 20. Epub 2021 Apr 20.

Yale School of Public Health, New Haven, CT.

Background: No population-based studies have examined chronic opioid use among cancer survivors who are diverse with respect to diagnosis, age group, and insurance status.

Methods: We conducted a retrospective cohort study using North Carolina (NC) cancer registry data linked with claims from public and private insurance (2006-2016). We included adults with non-metastatic cancer who had no prior chronic opioid use (N = 38,366). We used modified Poisson regression to assess the adjusted relative risk of chronic opioid use in survivorship (>90-day continuous supply of opioids in the 13-24 months following diagnosis) associated with patient characteristics.

Results: Only 3.0% of cancer survivors in our cohort used opioids chronically in survivorship. Predictors included younger age (adjusted risk ratio [aRR], 50-59 vs 60-69 = 1.23, 95% confidence interval [CI] = 1.05-1.43), baseline depression (aRR = 1.22, 95% CI = 1.06-1.41) or substance use (aRR = 1.43, 95% CI = 1.15-1.78) and Medicaid (aRR vs Private = 1.93, 95% CI = 1.56-2.40). Survivors who used opioids intermittently (vs not at all) before diagnosis were twice as likely to use opioids chronically in early survivorship (aRR = 2.62, 95% CI = 2.28-3.02). Those who used opioids chronically (vs intermittently or not at all) during active treatment had a nearly 17-fold increased likelihood of chronic use in survivorship (aRR = 16.65, 95 CI = 14.30-19.40).

Conclusions: Younger and low-income survivors, those with baseline depression or substance use, and those who require chronic opioid therapy during treatment are at increased risk for chronic opioid use in survivorship. Our findings point to opportunities improve assessment of psychosocial histories and to engage patients in shared decision-making around long-term pain management, when chronic opioid therapy is required during treatment.
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http://dx.doi.org/10.1093/jnci/djab082DOI Listing
April 2021

Improving reporting standards for polygenic scores in risk prediction studies.

Nature 2021 Mar 10;591(7849):211-219. Epub 2021 Mar 10.

Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, MA, USA.

Polygenic risk scores (PRSs), which often aggregate results from genome-wide association studies, can bridge the gap between initial discovery efforts and clinical applications for the estimation of disease risk using genetics. However, there is notable heterogeneity in the application and reporting of these risk scores, which hinders the translation of PRSs into clinical care. Here, in a collaboration between the Clinical Genome Resource (ClinGen) Complex Disease Working Group and the Polygenic Score (PGS) Catalog, we present the Polygenic Risk Score Reporting Standards (PRS-RS), in which we update the Genetic Risk Prediction Studies (GRIPS) Statement to reflect the present state of the field. Drawing on the input of experts in epidemiology, statistics, disease-specific applications, implementation and policy, this comprehensive reporting framework defines the minimal information that is needed to interpret and evaluate PRSs, especially with respect to downstream clinical applications. Items span detailed descriptions of study populations, statistical methods for the development and validation of PRSs and considerations for the potential limitations of these scores. In addition, we emphasize the need for data availability and transparency, and we encourage researchers to deposit and share PRSs through the PGS Catalog to facilitate reproducibility and comparative benchmarking. By providing these criteria in a structured format that builds on existing standards and ontologies, the use of this framework in publishing PRSs will facilitate translation into clinical care and progress towards defining best practice.
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http://dx.doi.org/10.1038/s41586-021-03243-6DOI Listing
March 2021

Patient Perspectives on the Risk-Based NLST Outcomes Tool for Lung Cancer Screening.

J Cancer Educ 2021 Mar 9. Epub 2021 Mar 9.

Department of Radiology, Walter Reed National Military Medical Center, Bethesda, MD, USA.

Researchers at the NCI have developed the Risk-Based NLST Outcomes Tool (RNOT), an online tool that calculates risk of lung cancer diagnosis and death with and without lung cancer screening, and false-positive risk estimates. This tool has the potential to facilitate shared decision making for screening. The objective of this study was to examine how current heavy and former smokers understand and respond to personalized risk estimates from the RNOT. Individuals who were eligible for lung cancer screening and were visiting Walter Reed National Military Medical Center were invited to participate in a semi-structured interview to assess their experiences with and perceptions of the RNOT. Results were analyzed using template analysis. Participants found their risk of lung cancer death to be lower than anticipated and were confused by changes in risk for lung cancer diagnosis with and without screening. Most participants indicated that the RNOT would be helpful in making screening decisions, despite reporting that there was no maximum risk for a false positive that would lead them to forgo lung cancer screening. Participants provided actionable needs and recommendations to optimize this tool. Risk-based screening tools may enhance shared decision making. The RNOT is being updated to incorporate these findings.
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http://dx.doi.org/10.1007/s13187-021-01977-5DOI Listing
March 2021

Age at initiation of screening mammography by family history of breast cancer in the breast cancer surveillance consortium.

Cancer Causes Control 2021 Jan 24;32(1):103-107. Epub 2020 Oct 24.

Kaiser Permanente Washington Health Research Institute, Kaiser Permanente Washington, Seattle, WA, USA.

Purpose: Women with a first-degree family history of breast cancer (FHBC) are sometimes advised to initiate screening mammography when they are 10 years younger than the age at which their youngest relative was diagnosed, despite a lack of unambiguous evidence that this is an effective strategy. It is unknown how often this results in women initiating screening earlier (< 40 years) than screening guidelines recommend for average-risk women.

Methods: We examined screening initiation age by FHBC and age at diagnosis of the youngest relative using data collected by the Breast Cancer Surveillance Consortium on 74,838 first screening mammograms performed between 1996 and 2016.

Results: Of the 74,838 women included in the study, nearly 9% reported a FHBC. Approximately 16.8% of women who initiated mammography before 40 years reported a FHBC. More women with a FHBC than without initiated screening < 40 years (48% vs. 23%, respectively). Among women with a FHBC who initiated screening < 40 years, 65% were 10 years younger than the age at which their relative was diagnosed.

Conclusion: Women with a first-degree relative diagnosed with breast cancer were more likely to start screening before 40 years than women reporting no FHBC, especially if their relative was diagnosed before 50 years.
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http://dx.doi.org/10.1007/s10552-020-01354-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7855994PMC
January 2021

Complementary approaches to problem solving in healthcare and public health: implementation science and human-centered design.

Transl Behav Med 2020 Sep 28. Epub 2020 Sep 28.

Division of Pharmaceutical Outcomes and Policy, Eshelman School of Pharmacy, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

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http://dx.doi.org/10.1093/tbm/ibaa079DOI Listing
September 2020

Barriers and facilitators for cascade testing in genetic conditions: a systematic review.

Eur J Hum Genet 2020 12 18;28(12):1631-1644. Epub 2020 Sep 18.

Division of Pharmaceutical Outcomes and Policy, UNC Eshelman School of Pharmacy, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

Cascade testing is the process of offering genetic counseling and testing to at-risk relatives of an individual who has been diagnosed with a genetic condition. It is critical for increasing the identification rates of individuals with these conditions and the uptake of appropriate preventive health services. The process of cascade testing is highly varied in clinical practice, and a comprehensive understanding of factors that hinder or enhance its implementation is necessary to improve this process. We conducted a systematic review to identify barriers and facilitators for cascade testing and searched PubMed, CINAHL via EBSCO, Web of Science, EMBASE, and the Cochrane Library for articles published from the databases' inception to November 2018. Thirty articles met inclusion criteria. Barriers and facilitators identified from these studies at the individual-level were organized into the following categories: (1) demographics, (2) knowledge, (3) attitudes, beliefs, and emotional responses of the individual, and (4) perceptions of relatives, relatives' responses, and attitudes toward relatives. At the interpersonal-level, barriers and facilitators were categorized as (1) family communication-, support- and dynamics-, and (2) provider-factors. Finally, barriers at the environmental-level relating to accessibility of genetic services were also identified. Our findings suggest that several individual, interpersonal and environmental factors may play a role in cascade testing. Future studies to further investigate these barriers and facilitators are needed to inform future interventions for improving the implementation of cascade testing for genetic conditions in clinical practice.
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http://dx.doi.org/10.1038/s41431-020-00725-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7784694PMC
December 2020

Stakeholder Perspectives on Overcoming Barriers to Cascade Testing in Lynch Syndrome: A Qualitative Study.

Cancer Prev Res (Phila) 2020 Dec 29;13(12):1037-1046. Epub 2020 Jul 29.

Division of Pharmaceutical Outcomes and Policy, UNC Eshelman School of Pharmacy, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.

Cascade testing (i.e., genetic testing of family members of individuals with disease) among families affected by hereditary cancer disorders, such as Lynch syndrome, is suboptimal and thus represents a missed opportunity in cancer prevention. We aimed to fill a gap in the literature by exploring multilevel barriers and facilitators to the implementation of cascade testing for Lynch syndrome. We conducted semistructured, in-depth interviews guided by the Consolidated Framework for Implementation Research and the Integrated Behavioral Model among key stakeholders ( = 60): Patients with Lynch syndrome and relatives ( = 20), providers ( = 20), and administrators ( = 20). Transcripts were double-coded (20% sample) using template analysis in ATLAS.ti. Barriers identified included (i) low awareness about Lynch syndrome, (ii) psychosocial barriers, (iii) lack of provider follow-up, (iv) accessibility to genetic counseling, and (v) fear of discrimination. Facilitators included (i) motivation to engage in cascade testing and (ii) free genetic testing offered to relatives. Stakeholders also recommended strategies to overcome implementation barriers in the short-term (increasing education, preparing patients for communicating with relatives), medium-term (optimizing clinical workflow and staffing resources), and long-term (nationwide standardization). These findings indicate that modifiable, multilevel barriers to the implementation of cascade testing in Lynch syndrome are experienced across stakeholders. Understanding and targeting implementation barriers is imperative to achieving public health impact of precision health interventions such as cascade testing.
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http://dx.doi.org/10.1158/1940-6207.CAPR-20-0141DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7718347PMC
December 2020

Involving patients and their families in deciding to use next generation sequencing: Results from a nationally representative survey of U.S. oncologists.

Patient Educ Couns 2021 01 3;104(1):33-39. Epub 2020 Mar 3.

Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, USA.

Objective: Next generation sequencing (NGS) may aid in tumor classification and treatment. Barriers to shared decision-making may influence use of NGS. We examined, from oncologists' perspectives, whether barriers to involving patients/families in decision-making were associated with NGS use.

Methods: Using data from the first national survey of medical oncologists' perspectives on precision medicine (N = 1281), we approached our analyses in two phases. Bivariate analyses initially evaluated associations between barriers to involving patients/families in deciding to use NGS and provider- and organizational-level characteristics. Modified Poisson regressions then examined associations between patient/family barriers and NGS use.

Results: Approximately 59 % of oncologists reported at least one barrier to involving patients/families in decision-making regarding NGS use. Those reporting patient/family barriers tended to have fewer genomic resources at their practices, to be in rural or suburban areas, and to have a higher proportion of Medicaid patients. However, these barriers were not associated with NGS use.

Conclusions: Oncologists encounter barriers to involving patients/families in NGS testing decisions. Organizational barriers may also potentially play a role in testing decisions.

Practice Implications: To foster patient-centered care, strategies to support patient involvement in genomic testing decisions are needed, particularly among practices in low-resource settings.
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http://dx.doi.org/10.1016/j.pec.2020.03.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7484216PMC
January 2021

The FDA authorization of direct-to-consumer genetic testing for three pathogenic variants: a twitter analysis of the public's response.

JAMIA Open 2019 Dec 17;2(4):411-415. Epub 2019 Sep 17.

Boston University College of Communication, Division of Emerging Media Studies, Boston, Massachusetts, USA.

Objectives: In March 2018, the Food and Drug Administration (FDA) announced its authorization of a direct-to-consumer (DTC) genetic test for three pathogenic variants. We sought to determine to whether social media discussion increased following the authorization, who was driving social media conversations, and what topics were discussed.

Methods: Using Crimson Hexagon, we described tweets before, during, and after the FDA announcement authorizing 23andMe to return results (3/4/18-3/10/18). We conducted qualitative coding of a subset of 605 tweets to better understand Twitter communication.

Results: We identified 11 055 twitter posts across the week of FDA's announcement. Twitter discourse about 23andMe and the FDA authorization peaked the day following the FDA's press release. Most tweets (48.6%) were informational and 26.3% were either expressing opinions (about 23andMe and/or FDA authorization, 14.9%) or testimonials (personal experiences with genetic testing, 11.4%). The types of tweets varied over the week-long period (.001).

Discussion: Twitter discussion about the FDA's authorization of DTC for three pathogenic variants increased immediately following the announcement. As more genetic technologies are brought to the DTC market, social media sites, like Twitter, will play a role in disseminating this information, providing a platform for information exchange, consumer testimonials, opinion pieces, and research.
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http://dx.doi.org/10.1093/jamiaopen/ooz037DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6993995PMC
December 2019

Perspectives From Early Career Investigators Who Are "Staying in the Game" of Precision Public Health Research.

Am J Public Health 2019 09;109(9):1186-1187

Caitlin G. Allen is with the Department of Behavioral Sciences and Health Education, Emory University Rollins School of Public Health, Atlanta, GA. Alison E. Fohner is with the Department of Epidemiology, University of Washington, Seattle. Latrice Landry is with Harvard School of Public Health, Cambridge, MA. Jean L. Paul is with the Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria. Samuel G. Smith is with Leeds Institute of Health Sciences, University of Leeds, Leeds, United Kingdom. Erin Turbitt is with the Graduate School of Health, University of Technology Sydney, Ultimo, Australia. Megan C. Roberts is with the Division of Pharmaceutical Outcomes and Policy, University of North Carolina Eshelman School of Pharmacy, Chapel Hill.

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http://dx.doi.org/10.2105/AJPH.2019.305199DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6687233PMC
September 2019

Early career investigators and precision public health.

Lancet 2019 Aug;394(10196):382-383

Division of Pharmaceutical Outcomes and Policy, University of North Carolina, Eshelman School of Pharmacy, Chapel Hill, NC, USA.

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http://dx.doi.org/10.1016/S0140-6736(19)30498-2DOI Listing
August 2019

Perspective: The Clinical Use of Polygenic Risk Scores: Race, Ethnicity, and Health Disparities.

Ethn Dis 2019 18;29(3):513-516. Epub 2019 Jul 18.

Center for Translation Research and Implementation Science, National Heart, Lung, and Blood Institute, Bethesda, MD.

Polygenic risk scores (PRS) are an emerging precision medicine tool based on multiple gene variants that, taken alone, have weak associations with disease risks, but collectively may enhance disease predictive value in the population. However, the benefit of PRS may not be equal among non-European populations, as they are under-represented in genome-wide association studies (GWAS) that serve as the basis for PRS development. In this perspective, we discuss a path forward, which includes: 1) inclusion of underrepresented populations in PRS research; 2) global efforts to build capacity for genomic research; 3) equitable implementation of these tools in clinical practice; and 4) traditional public health approaches to reduce risk of adverse health outcomes as an important component to precision health. As precision medicine is implemented in clinical care, researchers must ensure that advances from PRS research will benefit all.
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http://dx.doi.org/10.18865/ed.29.3.513DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6645721PMC
July 2019

Emerging Concepts in Precision Medicine and Cardiovascular Diseases in Racial and Ethnic Minority Populations.

Circ Res 2019 06 20;125(1):7-13. Epub 2019 Jun 20.

Office of Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, GA (M.J.K.).

Cardiovascular diseases remain the leading cause of mortality and a major contributor to preventable deaths worldwide. The dominant modifiable risk factors and the social and environmental determinants that increase cardiovascular risk are known, and collectively, are as important in racial and ethnic minority populations as they are in majority populations. Their prevention and treatment remain the foundation for cardiovascular health promotion and disease prevention. Genetic and epigenetic factors are increasingly recognized as important contributors to cardiovascular risk and provide an opportunity for advancing precision cardiovascular medicine. In this review, we explore emerging concepts at the interface of precision medicine and cardiovascular disease in racial and ethnic minority populations. Important among these are the lack of racial and ethnic diversity in genomics studies and biorepositories; the resulting misclassification of benign variants as pathogenic in minorities; and the importance of ensuring ancestry-matched controls in variant interpretation. We address the relevance of epigenetics, pharmacogenomics, genetic testing and counseling, and their social and cultural implications. We also examine the potential impact of precision medicine on racial and ethnic disparities. The National Institutes of Health's All of Us Research Program and the National Heart, Lung, and Blood Institute's Trans-Omics for Precision Medicine Initiative are presented as examples of research programs at the forefront of precision medicine and diversity to explore research implications in minorities. We conclude with an overview of implementation research challenges in precision medicine and the ethical implications in minority populations. Successful implementation of precision medicine in cardiovascular disease in minority populations will benefit from strategies that directly address diversity and inclusion in genomics research and go beyond race and ethnicity to explore ancestry-matched controls, as well as geographic, cultural, social, and environmental determinants of health.
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http://dx.doi.org/10.1161/CIRCRESAHA.119.314970DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6590684PMC
June 2019

Uptake of the 21-Gene Assay Among Women With Node-Positive, Hormone Receptor-Positive Breast Cancer.

J Natl Compr Canc Netw 2019 06;17(6):662-668

National Cancer Institute, Bethesda, Maryland, and.

Background: This study assessed uptake of the Oncotype DX 21-gene assay over time and characterized which sociodemographic and clinical factors are associated with test uptake among women with lymph node-positive (LN+), hormone receptor-positive, HER2-negative breast cancer.

Methods: Invasive breast cancer cases diagnosed in 2010 through 2013 were included from a SEER database linked to 21-gene assay results performed at Genomic Health's Clinical Laboratory. Factors associated with 21-gene assay uptake were identified using a multivariable logistic regression model.

Results: Uptake of the 21-gene assay increased over time and differed by race, socioeconomic status (SES), and age. In the multivariable model, when clinical and SES variables were controlled for, racial differences in test uptake were no longer observed. Private insurance status was associated with higher odds of 21-gene assay uptake (Medicaid vs private insurance: adjusted odds ratio, 0.86; P=.02), and high area-level SES was associated with an increased odds of uptake (quintile 5 vs 1: adjusted odds ratio, 1.6; P<.001). Demographic factors such as age and marital status influenced test uptake, and use varied greatly by geographic region. Uptake of the 21-gene assay increased over time and preceded the assay's inclusion in the NCCN Guidelines for LN+ breast cancer. Differences in uptake by race, SES, and age have persisted over time. However, when clinical and SES variables were controlled for, racial differences in assay uptake were no longer observed. Socioeconomic variables, such as health insurance type and area-level SES, were associated with assay uptake.

Conclusions: Future research should continue to document practice patterns related to the 21-gene assay. Given variation in testing associated with area-level SES, insurance coverage, and geographic region, interventions to understand and reduce differential uptake are needed to ensure equitable access to this genomic test.
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http://dx.doi.org/10.6004/jnccn.2018.7266DOI Listing
June 2019

Associations Between Objective Television Exposure and Cancer Perceptions in a National Sample of Adults.

Cancer Control 2019 Jan-Dec;26(1):1073274819846603

2 Division of Cancer Control and Population Sciences, The National Cancer Institute, Bethesda, MD, USA.

The expanding sources of media coverage of cancer may have a powerful impact on emotions, cancer knowledge, information seeking, and other health behaviors. We explored whether television advertisements were associated with cancer worry, perceived risk, and perceived ability to prevent cancer using cross-sectional data from the Health Information National Trends Survey (HINTS) linked to television advertisement data from Kantar Media. We conducted hierarchical linear modeling assessing 2-level models for each of the 3 outcomes of interest. The most common content included advertisements for cancer clinics (54.4%), public service announcements about cancer (22.0%), and advertisements about cancer organizations (9.1%). Most variance in cancer perceptions was due to individual-level characteristics and not exposure to television advertisements, which aligns with previous literature suggesting a small, but significant, association of television exposure with health beliefs. Higher levels of exposures to cancer-specific television advertisements were associated with higher levels of risk perceptions. Additionally, older adults' levels of perceived worry and risk were more likely to be associated with television exposure than younger adults. Given the substantial investments being made in cancer advertisements on television, the differences in exposure are important to consider in future efforts to understand predictors of beliefs about cancer and in the development of interventions designed to target risk-reducing behaviors.
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http://dx.doi.org/10.1177/1073274819846603DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6537258PMC
November 2019

The current state of funded NIH grants in implementation science in genomic medicine: a portfolio analysis.

Genet Med 2019 05 26;21(5):1218-1223. Epub 2017 Oct 26.

Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, Maryland, USA.

Purpose: Implementation science offers methods to evaluate the translation of genomic medicine research into practice. The extent to which the National Institutes of Health (NIH) human genomics grant portfolio includes implementation science is unknown. This brief report's objective is to describe recently funded implementation science studies in genomic medicine in the NIH grant portfolio, and identify remaining gaps.

Methods: We identified investigator-initiated NIH research grants on implementation science in genomic medicine (funding initiated 2012-2016). A codebook was adapted from the literature, three authors coded grants, and descriptive statistics were calculated for each code.

Results: Forty-two grants fit the inclusion criteria (~1.75% of investigator-initiated genomics grants). The majority of included grants proposed qualitative and/or quantitative methods with cross-sectional study designs, and described clinical settings and primarily white, non-Hispanic study populations. Most grants were in oncology and examined genetic testing for risk assessment. Finally, grants lacked the use of implementation science frameworks, and most examined uptake of genomic medicine and/or assessed patient-centeredness.

Conclusion: We identified large gaps in implementation science studies in genomic medicine in the funded NIH portfolio over the past 5 years. To move the genomics field forward, investigator-initiated research grants should employ rigorous implementation science methods within diverse settings and populations.
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http://dx.doi.org/10.1038/gim.2017.180DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5920776PMC
May 2019

Leveraging Implementation Science to Address Health Disparities in Genomic Medicine: Examples from the Field.

Ethn Dis 2019 21;29(Suppl 1):187-192. Epub 2019 Feb 21.

Office of Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, Georgia.

The integration of genomic data into screening, prevention, diagnosis, and treatment for clinical and public health practices has been slow and challenging. Implementation science can be applied in tackling the barriers and challenges as well as exploring opportunities and best practices for integrating genomic data into routine clinical and public health practice.In this article, we define the state of disparities in genomic medicine and focus predominantly on late-stage research findings. We use case studies from genetic testing for cardiovascular diseases (familial hypercholesterolemia) and cancer (Lynch syndrome and hereditary breast and ovarian cancer syndrome) in high-risk populations to consider current disparities and related barriers in turning genomic advances into population health impact to advance health equity. Finally, we address how implementation science can address these translational barriers and we discuss the strategic importance of collaborative multi-stakeholder approaches that engage public health agencies, professional societies, academic health and research centers, community clinics, and patients and their families to work collectively to improve population health and reduce or eliminate health inequities.
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http://dx.doi.org/10.18865/ed.29.S1.187DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6428174PMC
June 2020

Psychosocial, attitudinal, and demographic correlates of cancer-related germline genetic testing in the 2017 Health Information National Trends Survey.

J Community Genet 2019 Oct 20;10(4):453-459. Epub 2019 Feb 20.

National Cancer Institute, 9609 Medical Center Drive, Rockville, MD, 20850, USA.

The study objective was to examine bivariate and multivariate associations among worry, perceptions, attitudes, sociodemographics, and uptake of cancer-related germline genetic testing. We used data from the Health Information National Trends Survey (cycle 5.1), administered (January-May 2017) to a nationally representative sample of non-institutionalized adults (n = 3285). Those who had "heard about genetic tests that determine how a disease can be treated" had a higher likelihood of Lynch syndrome and BRCA1/2 testing (aRR = 2.57, p < 0.01; aRR = 3.23, p < 0.04). Attitudinal and psychosocial variables were not associated with uptake. Future research should explore ways to educate the public about the potential use of genetics in treatment decision-making.
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http://dx.doi.org/10.1007/s12687-018-00405-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754484PMC
October 2019

Genetic counseling, genetic testing, and risk perceptions for breast and colorectal cancer: Results from the 2015 National Health Interview Survey.

Prev Med 2019 06 25;123:12-19. Epub 2019 Feb 25.

National Human Genome Research Institute, Bethesda, MD, United States of America; National Cancer Institute, Rockville, MD, United States of America.

We examined what proportion of the U.S. population with no personal cancer history reported receiving either genetic counseling or genetic testing for cancer risk, and also the association of these behaviors with cancer risk perceptions. We used data from the 2015 National Health Interview Survey. Objective relative risk scores for breast (women) and colorectal (men and women) cancer risk were generated for individuals without a personal history of cancer. Participants' risk perceptions were compared with their objective relative risk. Of 12,631 women, 1.2% reported receiving genetic counseling and 0.8% genetic testing for hereditary breast cancer risk. Of 15,085 men and women, 0.8% reported receiving genetic counseling and 0.3% genetic testing for hereditary colorectal cancer risk. Higher breast cancer risk perception was associated with genetic counseling (OR: 4.31, 95%CI: 2.56, 7.26) and testing (OR: 3.56, 95%CI: 1.80, 7.03). Similarly, higher perception of colorectal cancer risk was associated with genetic counseling (OR: 5.04, 95%CI: 2.57, 9.89) and testing (OR: 5.92, 95%CI: 2.40, 14.63). A higher proportion of individuals with colorectal cancer risk perceptions concordant with their objective risk (vs. discordant) had undergone genetic counseling or testing for colorectal cancer risk. Concordant risk perceptions for breast cancer were not associated with breast cancer genetic counseling or testing. Given frequent dialogue about implementing population level programs involving genetic services for cancer risk, policy makers and investigators should consider the role of risk perceptions in the effectiveness and design of such programs and potential strategies for addressing inaccuracies in risk perceptions.
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http://dx.doi.org/10.1016/j.ypmed.2019.02.027DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7321923PMC
June 2019

Differences in Family Health History Knowledge Among Bisexual and Lesbian Women.

LGBT Health 2019 04 21;6(3):134-137. Epub 2019 Feb 21.

Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, Maryland.

Purpose: We aimed to determine whether there are differences between sexual minority women and heterosexual women in family health history knowledge.

Methods: We used data from Dr. Susan Love Research Foundation's The Health of Women Study. We included women who completed two of six online surveys between 2012 and 2015 (n = 22,410).

Results: Compared with heterosexual women, bisexual and lesbian women had consistently greater odds of not knowing their family health history (e.g., odds ratios of 2.59 and 1.56 for breast cancer, respectively).

Conclusion: To avoid exacerbating existing health disparities, in the era of precision medicine, we must address gaps in knowledge of family health history.
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http://dx.doi.org/10.1089/lgbt.2018.0217DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6477583PMC
April 2019

Ethnic identity and engagement with genome sequencing research.

Genet Med 2019 08 20;21(8):1735-1743. Epub 2018 Dec 20.

Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.

Purpose: We examined the role of ethnic identity (which measures the degree to which individuals identify with their ethnic group) in beliefs about, and intentions to learn, genomic results.

Methods: A longitudinal cohort was recruited to implement genome sequencing among healthy participants self-identifying as African, African American, or Afro-Caribbean, 40-65 years old (n = 408). Before receiving genomic results, participants completed a survey assessing social and behavioral constructs related to health, genomics, and ethnic identity.

Results: Ethnic identity was positively correlated with perceived value of genomic results and expected benefits from genomic research participation. Among participants with stronger ethnic identity, cognitive beliefs (perceived value of results [b = 0.63, 95% confidence interval: 0.29, 0.98, p < 0.001] and expected benefits from genomic research participation [b = 0.32, 95% confidence interval: 0.12, 0.53, p = 0.002]) were associated with intentions to receive results. Among those with weaker ethnic identity, there was no such association.

Conclusion: Individuals with stronger ethnic identity seem to attend more to cognitive beliefs such as the value of genomic results when deliberating receipt of results compared with those with weaker ethnic identity. Understanding ethnic identity variation and its influence on genome sequencing perceptions and intentions can inform future research opportunities using ethnic identity to explore specific practical, clinical questions.
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http://dx.doi.org/10.1038/s41436-018-0410-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6586548PMC
August 2019

Current Social Media Conversations about Genetics and Genomics in Health: A Twitter-Based Analysis.

Public Health Genomics 2018 22;21(1-2):93-99. Epub 2018 Nov 22.

The National Cancer Institute, Rockville, Maryland, USA.

Background: The growing availability of genomic information to the public may spur discussion about genetics and genomics on social media. Sites, including Twitter, provide a unique space for the public to access and discuss health information. The objective of this study was to better understand how social media users are sharing information about genetics and genomics in health and healthcare and what information is most commonly discussed among Twitter users.

Methods: We obtained tweets with specific genetics- and genomics-related keywords from Crimson Hexagon. We used Boolean logic to collect tweets containing chosen keywords within the timeframe of October 1, 2016, to October 1, 2017. Features of the software were used to identify salient themes in conversation, conduct an emergent content analysis, and gather key demographic information.

Results: We obtained 347,196 tweets from our search. There was a monthly average volume of 28,432 tweets. The five categories of tweets included: genetic disorders/disease (45.3%), health (15.6%), genomics (8%), and genetic testing (7.3%). Top influencers in the conversation included news outlets and universities.

Conclusions: This content analysis provides insight about the types of conversation related to genomics and health. Conversations about genomics are occurring on Twitter, and they frequently emphasize rare genetic diseases and genetic disorders. These discussions tend to be driven by key influencers who primarily include news media outlets. Further understanding of the discussions related to genomics and health in social media may offer insight about topics of importance to the public.
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http://dx.doi.org/10.1159/000494381DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6504926PMC
April 2019

Concordance with BRCA1/2 testing guidelines among women in The Health of Women (HOW) Study.

Breast Cancer Res Treat 2019 Feb 9;173(3):719-726. Epub 2018 Nov 9.

Division of Cancer Control and Population Sciences, National Cancer Institute, 9609 Medical Center Drive, Rockville, MD, 20850, USA.

Purpose: To evaluate factors associated with compliance to the National Comprehensive Cancer Network (NCCN) guidelines for BRCA1/2 testing and identify groups who are at risk of under- and over-use of BRCA1/2 testing.

Methods: Data included 20,758 women from Dr. Susan Love Research Foundation's The Health of Women (HOW) Study. Multinomial logistic regression was used to examine the association of socioeconomic and demographic characteristics with whether the woman was over-, under-, or appropriately tested for BRCA1/2 mutations, per 2015 NCCN guidelines.

Results: 3894 women (18.8%) reported BRCA1/2 testing. 5628 (27.1%) women who met NCCN criteria for testing were not tested. Among women with a history of breast cancer, those without health insurance were more likely to be under-tested (OR 2.04, 95% CI 1.15-3.60) than those with managed care insurance, and higher education was associated with a lower likelihood of under-testing (Graduate/professional degree OR 0.71, 95% CI 0.55-0.91).

Conclusion: Almost 30% of women were under-tested, indicating that many high-risk women who may benefit from genetic testing are currently being missed. Without appropriate testing, providers are unable to tailor screening recommendations to those carrying mutations who are at highest risk. Patient and healthcare provider education and outreach targeted to low-income and under-served populations may assist in reducing under-testing.
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http://dx.doi.org/10.1007/s10549-018-5035-0DOI Listing
February 2019

Recommendations for Research and Practice to Improve Work Outcomes Among Cancer Survivors.

J Natl Cancer Inst 2018 10;110(10):1041-1047

University of Colorado Cancer Center, Denver, CO.

Major knowledge gaps limit the development and implementation of interventions to improve employment outcomes among people with cancer. To identify research priorities to improve employment outcomes after cancer, the National Cancer Institute sponsored the meeting "Evidence-Based Approaches for Optimizing Employment Outcomes among Cancer Survivors." This article describes research recommendations stemming from the meeting. At the patient level, longitudinal studies are needed to better understand how patient sociodemographic and clinical characteristics and their experiences at work shape employment outcomes. Interventions that mitigate the impact of cancer and its treatment on employment are critical. At the provider-level, future research is needed to characterize the extent to which physicians and other healthcare providers talk to their patients about employment concerns and how that information is used to inform care. Additionally, there is a need to test models of care delivery that support routine screening of employment concerns, the capture of employment outcomes in electronic health records, and the effective use of this information to improve care. At the employer level, evidence-based training programs are needed to prepare supervisors, managers, human resources staff, and occupational health professionals to address health issues in the workplace; and future interventions are needed to improve patient -employer communication and facilitate workplace accommodations. Importantly, research is needed that reflects the perspectives and priorities of patients and their families, providers and healthcare systems, and employers. Transdisciplinary partnerships and stakeholder engagement are essential to ensure that employment-focused interventions and policies are developed, implemented, and sustained in real-world healthcare delivery and workplace settings.
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http://dx.doi.org/10.1093/jnci/djy154DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6454422PMC
October 2018

Differences in Coping with Breast Cancer Between Lesbian and Heterosexual Women: A Life Course Perspective.

J Womens Health (Larchmt) 2019 08 21;28(8):1023-1030. Epub 2018 Aug 21.

2Department of Community Health Sciences, Boston University School of Public Health, Boston, Massachusetts.

We tested a theoretical framework to explain differences in coping responses to breast cancer between lesbian and heterosexual women. Breast cancer survivors were recruited through cancer registries and community-based sampling. Cross-sectional telephone surveys were completed among self-identified lesbian ( = 330) and heterosexual ( = 595) women who were diagnosed with breast cancer. Five subscales from the Mini-Mental Adjustment to Cancer (Mini-MAC) Scale were used to measure coping with breast cancer among women post-treatment. Mediation analysis was used to examine the explanatory power of life course factors (, parenting and education) in explicating the association between sexual identity and coping responses. Lesbian women had lower mean scores on the anxious preoccupation and cognitive avoidance subscales ( < 0.05). These differences were moderated by age at diagnosis, with differences in anxious preoccupation and cognitive avoidance greater among women diagnosed with breast cancer before 45 years of age. Having children mediated the association between lesbian identity and anxious preoccupation, but only among women diagnosed at younger ages. College education mediated the association between lesbian identity and cognitive avoidance among women diagnosed at older ages. Despite previous evidence of suboptimal cancer care and gaps in supportive services, lesbian women with breast cancer demonstrate adaptive coping. This study calls for an increased focus on life course factors, both in the empirical and theoretical literature, which may partially explain some of this resiliency. Identifying mechanisms that lead to active coping can inform supportive care for both lesbian and heterosexual women.
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http://dx.doi.org/10.1089/jwh.2018.6940DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6909767PMC
August 2019

Implementation Challenges for Risk-Stratified Screening in the Era of Precision Medicine.

Authors:
Megan C Roberts

JAMA Oncol 2018 11;4(11):1484-1485

Division of Cancer Control and Population Sciences, The National Cancer Institute, Rockville, Maryland.

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http://dx.doi.org/10.1001/jamaoncol.2018.1940DOI Listing
November 2018

Delivery Of Cascade Screening For Hereditary Conditions: A Scoping Review Of The Literature.

Health Aff (Millwood) 2018 05;37(5):801-808

Heather Hampel is associate director of the Division of Human Genetics and of biospecimen research, and a professor of internal medicine, all at the Ohio State University Comprehensive Cancer Center, in Columbus.

Cascade screening is the process of contacting relatives of people who have been diagnosed with certain hereditary conditions. Its purpose is to identify, inform, and manage those who are also at risk. We conducted a scoping review to obtain a broad overview of cascade screening interventions, facilitators and barriers to their use, relevant policy considerations, and future research needs. We searched for relevant peer-reviewed literature in the period 1990-2017 and reviewed 122 studies. Finally, we described 45 statutes and regulations related to the use and release of genetic information across the fifty states. We sought standardized best practices for optimizing cascade screening across various geographic and policy contexts, but we found none. Studies in which trained providers contacted relatives directly, rather than through probands (index patients), showed greater cascade screening uptake; however, policies in some states might limit this approach. Major barriers to cascade screening delivery include suboptimal communication between the proband and family and geographic barriers to obtaining genetic services. Few US studies examined interventions for cascade screening or used rigorous study designs such as randomized controlled trials. Moving forward, there remains an urgent need to conduct rigorous intervention studies on cascade screening in diverse US populations, while accounting for state policy considerations.
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http://dx.doi.org/10.1377/hlthaff.2017.1630DOI Listing
May 2018

Lay Beliefs About the Accuracy and Value of Cancer Screening.

Am J Prev Med 2018 May 16;54(5):699-703. Epub 2018 Mar 16.

The National Cancer Institute, Rockville, Maryland.

Introduction: Appreciating the accuracy and value of cancer screening is essential to informed decision making about screening. This study's objectives were to (1) examine people's beliefs about the accuracy and value of cancer screening, and (2) determine whether sociodemographics, cancer beliefs, and shared decision making are associated with these beliefs.

Methods: Data from the National Cancer Institute's Health Information National Trends Survey (cycle 4, August-November 2014) were used. Respondents were non-institutionalized adults (aged ≥18 years, n=3,677). Weighted generalized linear modeling was used to examine bivariate and multivariate associations between key covariates and beliefs about cancer screening (assessed by four-item scale and independently). Secondary analyses examined whether these beliefs were associated with self-reported cancer screening. Data were analyzed between 2016 and 2017.

Results: Only 5.6% (n=189) of respondents answered all four cancer screening items correctly. Men, racial/ethnic minorities, and those with lower education and higher cancer fatalism were less likely to have accurate beliefs about cancer screening. However, those who reported shared decision making for colorectal cancer screening were more likely to know that "when a test finds something abnormal, more tests are needed to know if it is cancer" and "when a test finds something abnormal, it is [not] very likely to be cancer" (adjusted risk ratio=1.13, p<0.01, adjusted risk ratio=1.25, p<0.01). Beliefs were not associated with likelihood of past mammography or Pap testing.

Conclusions: Educators, researchers, and clinicians should consider opportunities (e.g., through shared decision making) to improve the accuracy of individuals' beliefs about cancer screening.
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http://dx.doi.org/10.1016/j.amepre.2018.02.002DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911403PMC
May 2018

Intentions to share exome sequencing results with family members: exploring spousal beliefs and attitudes.

Eur J Hum Genet 2018 05 23;26(5):735-739. Epub 2018 Feb 23.

Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes Health, Bethesda, MD, USA.

Given familial implications of genetic information, it is important to understand intentions to share carrier results with family members. To our knowledge, no studies among individuals undergoing exome sequencing have used dyadic data analysis to examine the effect of spousal perceptions and beliefs. Survey responses from 136 individuals (68 couples) undergoing exome sequencing in a research study were analyzed using dyadic analysis (the actor-partner interdependence model). Intention to share carrier results with family members was correlated between spouses (ICC = 0.43; 95% CI: 0.21-0.61; p = 0.004), as was worry about risk of a genetic condition in the family (ICC = 0.45; 95% CI: 0.24-0.62; p < 0.001). Perceived value of result and worry about risk of a genetic condition in the family were associated with one's own intentions to share carrier results. However, spousal status on these variables did not explain additional variance in an individual's intentions. Although we found no partner effects on intentions, spouses have comparable intentions to share carrier results, suggesting it may be important to account for non-independence in other research studies.
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http://dx.doi.org/10.1038/s41431-018-0118-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5945607PMC
May 2018