Associate Professor of Biostatistics
Dr. Melody Goodman’s efforts seek to understand the social risk factors that contribute to health disparities in urban areas, with the goal of developing culturally competent, region-specific, and evidence-based solutions through collaborative activities with community members, community-based organizations, faith-based organizations, and other community health stakeholders. The purpose of her work is the development of solutions for improving health in minority and medically underserved communities.
Dr. Goodman conducts applied biostatistical and survey research for community-based interventions and health disparities research with a strong focus on measurement. Additionally, through academic-community collaborations, she implements, evaluates, and enhances the infrastructure of community-engaged research, in order to mitigate health disparities. As such, Dr. Goodman is the Principal Investigator of a Patient-Centered Outcomes Research Institute (PCORI) grant that aims to validate and implement a quantitative survey measure to assess the level of community engagement in patient-centered outcomes research (PCOR) and clinical effectiveness research (CER) studies from the community stakeholder perspective.
Previously, Dr. Goodman has been subcontracted by the National Human Genome Research Institute/NIH to analyze patterns of beliefs about the genetic causation of health conditions and health behaviors among community health center patients. She was the Principal Investigator on a NIH Partners in Research grant entitled Community Alliance for Research Empowering Social change (CARES). With numerous funders supporting her work, she has published over 70 peer-reviewed journal articles.
BS, Economics and Applied Mathematics & Statistics, State University of New York at Stony Brook, Stony Brook, NYMS, Biostatistics, Harvard University, Cambridge, MAPhD, Biostatistics (Minors: Social Determinants of Health Disparities and Theoretical Statistics), Harvard University, Cambridge, MA
Siteman Cancer Center “Rock Doc” (2013)Satcher Health Leadership Institute - Morehouse School of Medicine, Community Health Leadership Institute Intensive Cohort II (2013)Women of the Year - Health, National Coalition of 100 Black Women, Inc. - Suffolk Chapter (2010)President’s Award for Teaching Excellence - Stony Brook University (2009)President’s Award for Excellence in Team Achievement - Stony Brook University (2008)
BiostatisticsCommunity HealthCommunity-based Participatory ResearchDissemination and Implementation of Evidence-based ProgramsHealth DisparitiesHealth EquityMinoritiesMinority HealthQuantitative Research
Comparison of unintended pregnancy at 12 months between two contraceptive care programs; a controlled time-trend designMadden, T., Paul, R., Maddipati, R., Buckel, C., Goodman, M., & Peipert, J. F.
Journal titleContraceptionObjectives: To compare unintended pregnancy rates at 12 months between women receiving structured contraceptive counseling plus usual contraceptive care and women receiving structured contraceptive counseling, healthcare provider education and cost support for long-acting reversible contraceptive (LARC) methods. Study design: Using a controlled time-trend study design, we first enrolled 502 women receiving structured contraceptive counseling in addition to usual care (“Enhanced Care”) and subsequently enrolled 506 women receiving counseling plus healthcare provider education and cost support for LARC methods (“Complete CHOICE”) at three federally qualified health centers (FQHCs). Cost support included funds to health centers for “on-the-shelf” LARC methods and no-cost LARC methods for uninsured women. Participants completed in-person baseline surveys and follow-up surveys by telephone at 3, 6 and 12 months. We used Kaplan–Meier survival function to estimate 12-month unintended pregnancy rates and Cox proportional-hazards regression to compare unintended pregnancy rates between the two groups. We imputed pregnancy outcomes for women lost to follow-up (9%) prior to 12 months. Results: “Complete CHOICE” participants were less likely to report an unintended pregnancy at 12 months compared to “Enhanced Care”; 5.3 vs. 9.8 pregnancies per 100 women-years (p=.01). After adjusting for confounders (recruitment site, race, age and federal poverty level), women in “Complete CHOICE” had a 40% lower risk of unintended pregnancy at 12 months (adjusted hazard ratio 0.60; 95% confidence interval 0.37–0.99). Conclusions: Contraceptive provision that includes cost support and healthcare provider education in addition to patient counseling reduced unintended pregnancy at 12 months compared to counseling plus usual contraceptive care. Implications: A program of contraceptive care that includes comprehensive counseling; healthcare provider education; cost support; and on-the-shelf, long-acting reversible contraception can reduce unintended pregnancy compared to contraceptive counseling in addition to usual health center care in the FQHC setting.
Effect of staff training and cost support on provision of long-acting reversible contraception in community health centersBuckel, C., Maddipati, R., Goodman, M., Peipert, J. F., & Madden, T.
Journal titleContraceptionObjective: To compare the proportion of women receiving same-day long-acting reversible contraception (LARC) between two different models of contraceptive provision adapted from the Contraceptive CHOICE Project. Study Design: We used a controlled time-trend study design to compare 502 women receiving structured contraceptive counseling in addition to usual care (“Enhanced Care”) to 506 women receiving counseling plus healthcare provider education and cost support for LARC (“Complete CHOICE”) at three federally qualified health centers. We provided funds to health centers to ensure an “on-the-shelf” supply and no-cost LARC for uninsured women. We recorded the contraceptive method chosen after contraceptive counseling and the healthcare provider appointment as well as the contraceptive method received that day. Among women choosing LARC, we calculated proportions and performed Poisson regression with robust error variance to estimate relative risks for same-day insertion. Results: Participant demographics reflected the health center populations; 69% were black, 66% had a high school diploma or less, 57% were publicly insured, and 75% reported household income less than 101% federal poverty line. There were 153 (30.5%) women in “Enhanced Care” and 273 (54.0%) in “Complete CHOICE” who chose LARC (p<0.01). Among women who chose LARC (n=426), those in “Complete CHOICE” were more likely to receive a same-day insertion, 53.8% vs. 13.7% (RR adj 4.73; 95%CI 3.20–6.98) compared to “Enhanced Care.” Conclusions: A contraceptive care model that included healthcare provider education and cost support for LARC in addition to structured contraceptive counseling resulted in higher rates of same-day LARC insertion compared to contraceptive counseling and usual care alone. Implications: Contraceptive care provision which includes contraceptive counseling, healthcare provider education, and “on-the-shelf”, long-acting reversible contraception facilitate same-day initiation of these methods. Interventions that focus solely on contraceptive counseling do not address other structural barriers to same-day contraceptive provision of all methods including cost and provider practice.
Factors affecting breast cancer patients' need for genetic risk information: From information insufficiency to information needHong, S. J., Biesecker, B., Ivanovich, J., Goodman, M., & Kaphingst, K. A.
Journal titleJournal of Genetic Counseling
Page(s)543-557Information-seeking models typically focus on information-seeking behaviors based on individuals' interest in information, because their current level is perceived to be insufficient. In the context of genetic risk information (GRI), however, information insufficiency is difficult to measure and thus can limit understanding of information behavior in the context of GRI. We propose that an individual's need for information might be a more direct and conceptually clearer alternative to predicting their information-seeking behavior. To test this hypothesis, this study investigates the extent to which previously identified factors affecting interest in GRI are also predictors of need for GRI among women diagnosed with breast cancer at the age of 40 or younger (N = 1,069). As hypothesized, there was a positive association between interest in and need for GRI. Furthermore, hypothesized factors of numeracy, information orientation, and genetic knowledge were significant predictors of increased interest in and need for GRI. In contrast, hypothesized factors of genetic worry and genetic causal belief predicted increased interest in GRI only, while genetic self-efficacy predicted increased need for GRI only. As hypothesized, BRCA status significantly moderated associations between informational norm and both interest in and need for GRI. Collectively, the findings support inclusion of need for GRI in theoretical information-seeking models in the context of genomic risk.
How neighborhoods matter in fatal interactions between police and men of colorJohnson, O., St. Vil, C., Gilbert, K. L., Goodman, M., & Johnson, C. A.
Journal titleSocial Science and Medicine
Page(s)226-235This article addresses the concern that death by legal intervention is a health outcome disproportionately experienced by boys and men of color, and predicated on the quality of the locations in which encounters with law enforcement occur. Using a more comprehensive cross-verified sample of police homicides from online databases and a nationally representative sample of law enforcement agencies, this study examines whether neighborhood social disorganization, minority threat, and defense of inequality theories help explain the odds that males of color will have a fatal interaction with police (FIP). There are several noteworthy results. First, in support of the defense of inequality thesis, we found that income inequality within the area in which a FIP occurred is related to increased relative odds of fatal injury for males of color and Hispanic males. Second, consistent with the minority threat thesis, we found low levels of racial segregation dramatically reduced the odds of a FIP for Black males while higher levels of segregation increased the odds for Hispanic males. Third, Hispanic males were over 2.6 times as likely as others to be killed by officers from agencies with relatively higher percentages of Hispanic officers. We conclude the study with a discussion of its implications for research and policy.
Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for BiobanksHong, S. J., Drake, B., Goodman, M., & Kaphingst, K. A.
Journal titleHealth CommunicationThis study investigates how patients’ privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals’ privacy concerns and trust in doctors were significantly associated with their need for control. Although participants’ privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.
Are You Making an Impact? Evaluating the Population Health Impact of Community Benefit ProgramsRains, C. M., Todd, G., Kozma, N., & Goodman, M.
Journal titleJournal of Public Health Management and Practice
Page(s)335-339Context: The Patient Protection and Affordable Care Act includes a change to the IRS 990 Schedule H, requiring nonprofit hospitals to submit a community health needs assessment every 3 years. Such health care entities are challenged to evaluate the effectiveness of community benefit programs addressing the health needs identified. Objective: In an effort to determine the population health impact of community benefit programs in 1 hospital outreach department, researchers and staff conducted an impact evaluation to develop priority areas and overarching goals along with program- and department-level objectives. Design: The longitudinal impact evaluation study design consists of retrospective and prospective secondary data analyses. Setting: As an urban pediatric hospital, St Louis Children's Hospital provides an array of community benefit programs to the surrounding community. Participants: Hospital staff and researchers came together to form an evaluation team. Data from program evaluation and administrative data for analysis were provided by hospital staff. Main Outcome Measure: Impact scores were calculated by scoring objectives as met or unmet and averaged across goals to create impact scores that measure how closely programs meet the overarching departmental mission and goals. Results: Over the 4-year period, there is an increasing trend in program-specific impact scores across all programs except one, Healthy Kids Express Asthma, which had a slight decrease in year 4 only. Implications: Current work in measuring and assessing the population health impact of community benefit programs is mostly focused on quantifying dollars invested into community benefit work rather than measuring the quality and impact of services. This article provides a methodology for measuring population health impact of community benefit programs that can be used to evaluate the effort of hospitals in providing community benefit. This is particularly relevant in our changing health care climate, as hospitals are being asked to justify community benefit and make meaningful contributions to population health. The Patient Protection and Affordable Care Act includes a change to the IRS 990 Schedule H, requiring nonprofit hospitals to submit a community health needs assessment every 3 years, and requires evaluation of program effectiveness; yet, it does not require any quantification of the impact of community benefit programs. The IRS Schedule H 990 policies could be strengthened by requiring an impact evaluation such as outlined in this article. Conclusion: As hospitals are being asked to justify community benefit and make meaningful contributions to population health, impact evaluations can be utilized to demonstrate the cumulative community benefit of programs and assess population health impact of community benefit programs.
Decision role preferences for return of results from genome sequencing amongst young breast cancer patientsMatsen, C. B., Lyons, S., Goodman, M., Biesecker, B. B., & Kaphingst, K. A.
Journal titlePatient Education and CounselingObjective: To better understand decision role preferences in women diagnosed with breast cancer at a young age for return of results of genome sequencing in research and clinical settings. Methods: Participants were surveyed about communication and decision-making preferences related to genome sequencing results and factors that may affect these preferences. The primary outcome was decision role preference (Control Preference Scale) for selecting what results to receive within medical care or within a research study. Results: For results returned as part of medical care, most patients preferred a collaborative (N = 481, 45%) or active (N = 488, 45%) role with only 107 (10%) choosing a passive role. When making the decision as part of a research study, most patients preferred an active role (N = 617, 57%), 350 (33%) choosing a collaborative role, and110 (10%) choosing a passive role. Conclusion: Most women in this study preferred to share in decision making. Participants had somewhat different role preferences for clinical and research contexts, with greater preference for active roles in the research context. Practice Implications: We advocate for practice guidelines that incorporate discussion of decision role as an integral part of patient centered care and shared decision-making and recognize that more work is needed to inform guidelines.
For the Sake of All: Civic Education on the Social Determinants of Health and Health Disparities in St. LouisPurnell, J. Q., Goodman, M., Tate, W. F., Harris, K. M., Hudson, D. L., Jones, B. D., Fields, R., Camberos, G., Elder, K., Drake, B., & Gilbert, K.
Journal titleUrban Education
Page(s)711-743Civic education translates research evidence about topics of social importance for broad public audiences, with increased understanding and meaningful action of the desired outcomes. For the Sake of All is an example of civic education on the social determinants of health and health disparities situated in the local context of St. Louis, Missouri. This article describes the research translation, community engagement, strategic communication, and approach to policy that characterized this project. It presents data highlighting racial disparities in health, educational, and economic outcomes, along with policy and programmatic recommendations. Engagement and implementation strategies are described within the context of the events in Ferguson.
How segregation makes Us Fat: Food behaviors and food environment as mediators of the relationship between residential segregation and individual body mass indexGoodman, M., Lyons, S., Dean, L. T., Arroyo, C., & Hipp, J. A.
Journal titleFrontiers in Public Health
Volume6Objectives: Racial residential segregation affects food landscapes that dictate residents' food environments and is associated with obesity risk factors, including individual dietary patterns and behaviors. We examine if food behaviors and environments mediate the association between segregation and body mass index (BMI). Methods: Non-Hispanic Whites and Blacks living in the St. Louis and Kansas City metro regions from 2012 to 2013 were surveyed on dietary behaviors, food environment, and BMI (n = 1,412). These data were combined with the CDC's modified retail food environment index and 2012 American Community Survey data to calculate racial segregation using various evenness and exposure indices. Multi-level mediation analyses were conducted to determine if dietary behavior and food environment mediate the association between racial residential segregation and individual BMI. Results: The positive association between racial segregation and individual BMI is partially mediated by dietary behaviors and fully mediated by food environments. Conclusion: Racial segregation (evenness and exposure) is associated with BMI, mediated by dietary behaviors and food environment. Elements of the food environment, which form the context for dietary behaviors, are potential targets for interventions to reduce obesity in residentially segregated areas.
Preferences for learning different types of genome sequencing results among young breast cancer patients: Role of psychological and clinical factorsKaphingst, K. A., Ivanovich, J., Lyons, S., Biesecker, B., Dresser, R., Elrick, A., Matsen, C., & Goodman, M.
Journal titleTranslational Behavioral Medicine
Page(s)71-79The growing importance of genome sequencing means that patients will increasingly face decisions regarding what results they would like to learn. The present study examined psychological and clinical factors that might affect these preferences. 1,080 women diagnosed with breast cancer at age 40 or younger completed an online survey. We assessed their interest in learning various types of genome sequencing results: risk of preventable disease or unpreventable disease, cancer treatment response, uncertain meaning, risk to relatives' health, and ancestry/physical traits. Multivariable logistic regression was used to examine whether being "very" interested in each result type was associated with clinical factors: BRCA1/2 mutation status, prior genetic testing, family history of breast cancer, and psychological factors: cancer recurrence worry, genetic risk worry, future orientation, health information orientation, and genome sequencing knowledge. The proportion of respondents who were very interested in learning each type of result ranged from 16% to 77%. In all multivariable models, those who were very interested in learning a result type had significantly higher knowledge about sequencing benefits, greater genetic risks worry, and stronger health information orientation compared to those with less interest (p-values <.05). Our findings indicate that high interest in return of various types of genome sequencing results was more closely related to psychological factors. Shared decision-making approaches that increase knowledge about genome sequencing and incorporate patient preferences for health information and learning about genetic risks may help support patients' informed choices about learning different types of sequencing results.
Biostatistics for clinical and public health researchGoodman, M.
Publication year2017Biostatistics for Clinical and Public Health Research provides a concise overview of statistical analysis methods. Use of SAS and Stata statistical software is illustrated in full, including how to interpret results. Focusing on statistical models without all the theory, the book is complete with exercises, case studies, take-away points, and data sets. Readers will be able to maximize their statistical abilities in hypothesis testing, data interpretation, and application while also learning when and how to consult a biostatistician. This book will be an invaluable tool for students and clinical and public health practitioners.
EVALUATING COMMUNITY ENGAGEMENT IN RESEARCH: QUANTITATIVE MEASURE DEVELOPMENTGoodman, M., Thompson, V. L. S., Arroyo Johnson, C., Gennarelli, R., Drake, B. F., Bajwa, P., Witherspoon, M., & Bowen, D.
Journal titleJournal of Community Psychology
Page(s)17-32Although the importance of community engagement in research has been previously established, there are few evidence-based approaches for measuring the level of community engagement in research projects. A quantitative community engagement measure was developed, aligned with 11 engagement principles (EPs) previously established in the literature. The measure has 96 Likert response items; 3–5 quality items and 3–5 quantity items measure each EP. Cronbach's alpha is used to examine the internal consistency of items that measure a single EP. Every EP item group had a Cronbach's alpha >.85, which indicates strong internal consistency for all question groups across both scales (quality and quantity). This information determines the level of community engagement, which can be correlated with other research outcomes.
Increasing Community Research Capacity to Address Health DisparitiesKomaie, G., Ekenga, C. C., Sanders Thompson, V. L., & Goodman, M.
Journal titleJournal of Empirical Research on Human Research Ethics
Page(s)55-66The Community Research Fellows Training program is designed to enhance capacity for community-based participatory research; program participants completed a 15-week, Master of Public Health curriculum. We conducted qualitative, semistructured interviews with 81 participants from two cohorts to evaluate the learning environment and how the program improved participants' knowledge of public health research. Key areas that provided a conducive learning environment included the once-a-week schedule, faculty and participant diversity, and community-focused homework assignments. Participants discussed how the program enhanced their understanding of the research process and raised awareness of public health-related issues for application in their personal lives, professional occupations, and in their communities. These findings highlight key programmatic elements of a successful public health training program for community residents.
Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young AgeElrick, A., Ashida, S., Ivanovich, J., Lyons, S., Biesecker, B. B., Goodman, M., & Kaphingst, K. A.
Journal titleJournal of Genetic Counseling
Page(s)173-181Genetic test results have medical implications beyond the patient that extend to biological family members. We examined psychosocial and clinical factors associated with communication of genetic test results within families. Women (N = 1080) diagnosed with breast cancer at age 40 or younger completed an online survey; 920 women that reported prior cancer genetic testing were included in analysis. We examined the proportion of immediate family members to whom they communicated genetic test results, and built multivariable regression models to examine clinical and psychosocial variables associated with the proportion score. Participants were most likely to communicate test results to their mother (83 %) and least likely to their son (45 %). Participants who carried a BRCA mutation (OR = 1.34; 95 % CI = 1.06, 1.70), had higher interest in genomic information (OR = 1.55; 95 % CI = 1.26, 1.91) and lower genetic worry (OR = 0.91; 95 % CI = 0.86, 0.96) communicated genetic test results to a greater proportion of their immediate family members. Participants with a BRCA1/2 mutation shared their genetic test results with more male family members (OR = 1.72; 95 % CI = 1.02, 2.89). Our findings suggest that patients with high worry about genetic risks, low interest in genomic information, or receive a negative genetic test result will likely need additional support to encourage family communication.
Reducing health disparities by removing cost, access, and knowledge barriersGoodman, M., Onwumere, O., Milam, L., & Peipert, J. F.
Journal titleAmerican Journal of Obstetrics and Gynecology
Page(s)382.e1-382.e5Background While the rate of unintended pregnancy has declined in the United States in recent years, unintended pregnancy among teens in the United States is the highest among industrialized nations, and disproportionately affects minority teens. Objective Our objective of this secondary analysis was to estimate the risk of unintended pregnancy for both Black and White teens age 15-19 years when barriers to access, cost, and knowledge are removed. Our hypothesis was that the Black-White disparities would be reduced when access, education, and cost barriers are removed. Study Design We performed an analysis of the Contraceptive CHOICE Project database. CHOICE is a longitudinal cohort study of 9256 sexually active girls and women ages 14-45 years in the St Louis, MO, region from 2007 through 2013. Two measures of disparities were used to analyze teenage pregnancy rates and pregnancy risk from 2008 through 2013 among teens ages 15-19 years. These rates were then compared to the rates of pregnancy among all sexually active teens in the United States during the years 2008, 2009, 2010, and 2011. We estimated an absolute measure (rate difference) and a relative measure (rate ratio) to examine Black-White disparities in the rates of unintended pregnancy. Results While national rates of unintended pregnancy are decreasing, racial disparities in these rates persist. The Black-White rate difference dropped from 158.5 per 1000 in 2008 to 120.1 per 1000 in 2011; however, the relative ratio disparity decreased only from 2.6-2.5, suggesting that Black sexually active teens in the United States have 2.5 times the rate of unintended pregnancy as White teenagers. In the CHOICE Project, there was a decreasing trend in racial disparities in unintended pregnancy rates among sexually active teens (age 15-19 years): 2008 through 2009 (rate difference, 18.2; rate ratio, 3.7), 2010 through 2011 (rate difference, 4.3; rate ratio, 1.2), and 2012 through 2013 (rate difference, –1.5; rate ratio, 1.0). Conclusion When barriers to cost, access, and knowledge were removed, such as in the Contraceptive CHOICE Project, Black-White disparities in unintended pregnancy rates among sexually active teens were reduced on both absolute and relative scales. The rate of unintended pregnancy was almost equal between Black and White teens compared to large Black-White disparities on the national level.
Breast reconstruction after mastectomy at a comprehensive cancer centerConnors, S. K., Goodman, M., Myckatyn, T., Margenthaler, J., & Gehlert, S.
Issue1Background: Breast reconstruction after mastectomy is an integral part of breast cancer treatment that positively impacts quality of life in breast cancer survivors. Although breast reconstruction rates have increased over time, African American women remain less likely to receive breast reconstruction compared to Caucasian women. National Cancer Institute-designated Comprehensive Cancer Centers, specialized institutions with more standardized models of cancer treatment, report higher breast reconstruction rates than primary healthcare facilities. Whether breast reconstruction disparities are reduced for women treated at comprehensive cancer centers is unclear. The purpose of this study was to further investigate breast reconstruction rates and determinants at a comprehensive cancer center in St. Louis, Missouri. Methods: Sociodemographic and clinical data were obtained for women who received mastectomy for definitive surgical treatment for breast cancer between 2000 and 2012. Logistic regression was used to identify factors associated with the receipt of breast reconstruction. Results: We found a breast reconstruction rate of 54 % for the study sample. Women who were aged 55 and older, had public insurance, received unilateral mastectomy, and received adjuvant radiation therapy were significantly less likely to receive breast reconstruction. African American women were 30 % less likely to receive breast reconstruction than Caucasian women. Conclusion: These findings suggest that racial disparities in breast reconstruction persist in comprehensive cancer centers. Future research should further delineate the determinants of breast reconstruction disparities across various types of healthcare institutions. Only then can we develop interventions to ensure all eligible women have access to breast reconstruction and the improved quality of life it affords breast cancer survivors.
Comparing treatment and outcomes of ductal carcinoma in situ among women in Missouri by raceMadubata, C. C., Liu, Y., Goodman, M., Yun, S., Yu, J., Lian, M., & Colditz, G. A.
Journal titleBreast Cancer Research and Treatment
Page(s)563-572Purpose: To investigate whether treatment (surgery, radiation therapy, and endocrine therapy) contributes to racial disparities in outcomes of ductal carcinoma in situ (DCIS). Patients and methods: The analysis included 8184 non-Hispanic White and 954 non-Hispanic Black women diagnosed with DCIS between 1996 and 2011 and identified in the Missouri Cancer Registry. Logistic regression models were used to estimate odds ratios (ORs) of treatment for race. We used Cox proportional hazards regression models to estimate hazard ratios (HRs) of ipsilateral breast tumor (IBT) and contralateral breast tumor (CBT) for race. Results: There was no significant difference between Black and White women in utilization of mastectomy (OR 1.16; 95 % CI 0.99–1.35) or endocrine therapy (OR 1.19; 95 % CI 0.94–1.51). Despite no significant difference in underutilization of radiation therapy (OR 1.14; 95 % CI 0.92–1.42), Black women had higher odds of radiation delay, defined as at least 8 weeks between surgery and radiation (OR 1.92; 95 % CI 1.55–2.37). Among 9138 patients, 184 had IBTs and 326 had CBTs. Black women had a higher risk of IBTs (HR 1.69; 95 % CI 1.15–2.50) and a comparable risk of CBTs (HR 1.19; 95 % CI 0.84–1.68), which were independent of pathological features and treatment. Conclusion: Racial differences in DCIS treatment and outcomes exist in Missouri. This study could not completely explain the higher risk of IBTs in Black women. Future studies should identify differences in timely initiation and completion of treatment, which may contribute to the racial difference in IBTs after DCIS.
Descriptive Analysis of the 2014 Race-Based Healthcare Disparities Measurement LiteratureGoodman, M., Gilbert, K. L., Hudson, D., Milam, L., & Colditz, G. A.
Journal titleJournal of racial and ethnic health disparities
Page(s)1-7Importance: There are more than 500 articles in the 2014 race-based healthcare disparities literature across a broad array of diseases and outcomes. However, unlike many other forms of research (e.g., clinical trials and systematic reviews), there are no required reporting guidelines when submitting results of disparities studies to journals. Objective: This study describes the race-based healthcare disparities measurement literature in terms of study design, journal characteristics, generation of health disparities research, type of disparity measure used, and adherence to disparities measurement guidelines. Methods: We searched three databases of peer-reviewed literature, PubMed, Ovid Medline, and JSTOR, for English language articles published in 2014 on racial/ethnic healthcare disparities. Studies must have quantitatively measured the difference in health outcomes between two racial/ethnic groups in order to be included. Our final sample included 266 studies from 167 medical and public health journals. Findings: Only 7 % (n = 19) of articles reported both an absolute and relative measure of disparity; the majority of studies (64 %, n = 171) reported only a relative measure of effect. Most studies were published in clinical journals (74 %, n = 198), used secondary data (86 %, n = 229), and calculated black-white disparities (82 %, n = 218). The most common condition studied was cancer (25 %, n = 67), followed by a surgical procedure (18 %, n = 48). On average, articles in the sample only met 61 % of the applicable guidelines on reporting of disparities. Conclusions and Relevance: To be able to synthesize findings in the racial disparities literature (meta-analysis), there is a need for the use of consistent methods for quantifying disparities and reporting in the literature. A more consistent battery of measures and consistent reporting across studies may help speed our understanding of the origins and development of solutions to address healthcare disparities. Despite guidelines for best practices in reporting disparities, there is a lack of adherence in the current literature.
Development of Plain Language Supplemental Materials for the Biobank Informed Consent ProcessDrake, B. F., Brown, K. M., Gehlert, S., Wolf, L. E., Seo, J., Perkins, H., Goodman, M., & Kaphingst, K. A.
Journal titleJournal of Cancer Education
Page(s)1-9The US Department of Health and Human Services addresses clear communication in the informed consent process as part of the Notice of Proposed Rulemaking for revisions to the Common Rule. However, prior research has shown that participants may not fully comprehend research studies despite completion of an informed consent process. Our main goal was to provide plain language information about donation processes to a cancer biobank to supplement an informed consent form. We developed and conducted cognitive testing with supplemental brochures that clearly communicated information about three different models for consent (notice, broad and study-specific) to future use of biospecimens. During the brochure development process, we conducted qualitative, semi-structured, individual, in-person cognitive interviews among 14 women to examine participants’ perceptions of the brochures. Each participant provided feedback regarding the understandability, graphics and layout, and cultural appropriateness of the brochures. Our findings demonstrate that these methods may be used to tailor consent form brochures, such as the ones developed here, to other populations. This study therefore adds to our understanding of how best to present content to help women from two different racial groups make informed decisions about participation in a cancer biobank.
Differences in preferences for models of consent for biobanks between Black and White womenBrown, K. M., Drake, B. F., Gehlert, S., Wolf, L. E., DuBois, J., Seo, J., Woodward, K., Perkins, H., Goodman, M., & Kaphingst, K. A.
Journal titleJournal of Community Genetics
Page(s)41-49Biobanks are essential resources, and participation by individuals from diverse groups is needed. Various models of consent have been proposed for secondary research use of biospecimens, differing in level of donor control and information received. Data are needed regarding participant preferences for models of consent, particularly among minorities. We conducted qualitative semi-structured interviews with 60 women to examine their attitudes about different models of consent. Recruitment was stratified by race (Black/White) and prior biobank participation (yes/no). Two coders independently coded interview transcripts. Qualitative thematic analysis was conducted using NVivo 10. The majority of Black and White participants preferred “broad” consent (i.e., blanket permission for secondary research use of biospecimens), and the second most preferred model for both groups was “study-specific” consent (i.e., consent for each future research study). The qualitative analysis showed that participants selected their most preferred model for 3 major reasons: having enough information, having control over their sample, and being asked for permission. Least preferred was notice model (i.e., participants notified that biospecimens may be used in future research). Attitudes toward models of consent differed somewhat by race and prior biobank participation. Participants preferred models of consent for secondary research use of biospecimens that provided them with both specific and general information, control over their biospecimens, and asked them to give permission for use. Our findings suggest that it will be important for researchers to provide information about future uses of biospecimens to the extent possible and have an explicit permission step for secondary research use.
Does learning about race prevent substance abuse? Racial discrimination, racial socialization and substance use among African AmericansThompson, A. B., Goodman, M., & Kwate, N. O. A.
Journal titleAddictive Behaviors
Estimates of mental health problems in a vulnerable population within a primary care settingHudson, D. L., Kaphingst, K. A., Croston, M. A., Blanchard, M. S., & Goodman, M.
Journal titleJournal of Health Care for the Poor and Underserved
Page(s)308-326We examined the prevalence of mental disorders in a primary care setting affiliated with a large academic medical center. We also examined whether there were racial differences in mental health disorders. Patients were seeking medical care in an outpatient medical clinic; mental health data were available for them via medical records (n=767). Overall, 45% of patients had a diagnosed mental health problem; the most commonly reported form of mental disorder was depression. African Americans (OR= 1.88; CI: 1.21– 2.91) were more likely than Whites to have a diagnosed mental health problem. These results suggest a strong mental health treatment need among patients seeking primary care in urban settings. The evidence garnered from this study underscores the need to detect and treat mental health problems systematically within outpatient primary care clinics that serve similarly vulnerable populations.
How, who, and when: Preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young ageKaphingst, K. A., Ivanovich, J., Elrick, A., Dresser, R., Matsen, C., & Goodman, M.
Journal titleMolecular Genetics and Genomic Medicine
Page(s)684-695Background The increasing use of genome sequencing with patients raises a critical communication challenge: return of secondary findings. While the issue of what sequencing results should be returned to patients has been examined, much less attention has been paid to developing strategies to return these results in ways that meet patients’ needs and preferences. To address this, we investigated delivery preferences (i.e., who, how, when) for individual genome sequencing results among women diagnosed with breast cancer at age 40 or younger. Methods We conducted 60 semistructured, in-person individual interviews to examine preferences for the return of different types of genome sequencing results and the reasons underlying these preferences. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Results The major findings from the study were that: (1) many participants wanted sequencing results as soon as possible, even at the time of breast cancer diagnosis; (2) participants wanted an opportunity for an in-person discussion of results; and (3) they put less emphasis on the type of person delivering results than on the knowledge and communicative skills of that person. Participants also emphasized the importance of a results return process tailored to a patient’s individual circumstances and one that she has a voice in determining. Conclusions A critical goal for future transdisciplinary research including clinicians, patients, and communication researchers may be to develop decision-making processes to help patients make decisions about how they would like various sequencing results returned.
Information Topics of Greatest Interest for Return of Genome Sequencing Results among Women Diagnosed with Breast Cancer at a Young AgeSeo, J., Ivanovich, J., Goodman, M., Biesecker, B. B., & Kaphingst, K. A.
Journal titleJournal of Genetic Counseling
Page(s)1-11We investigated what information women diagnosed with breast cancer at a young age would want to learn when genome sequencing results are returned. We conducted 60 semi-structured interviews with women diagnosed with breast cancer at age 40 or younger. We examined what specific information participants would want to learn across result types and for each type of result, as well as how much information they would want. Genome sequencing was not offered to participants as part of the study. Two coders independently coded interview transcripts; analysis was conducted using NVivo10. Across result types, participants wanted to learn about health implications, risk and prevalence in quantitative terms, causes of variants, and causes of diseases. Participants wanted to learn actionable information for variants affecting risk of preventable or treatable disease, medication response, and carrier status. The amount of desired information differed for variants affecting risk of unpreventable or untreatable disease, with uncertain significance, and not health-related. Women diagnosed with breast cancer at a young age recognize the value of genome sequencing results in identifying potential causes and effective treatments and expressed interest in using the information to help relatives and to further understand their other health risks. Our findings can inform the development of effective feedback strategies for genome sequencing that meet patients’ information needs and preferences.
Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young ageKaphingst, K. A., Ivanovich, J., Biesecker, B. B., Dresser, R., Seo, J., Dressler, L. G., Goodfellow, P. J., & Goodman, M.
Journal titleClinical Genetics
Page(s)378-384While experts have made recommendations, information is needed regarding what genome sequencing results patients would want returned. We investigated what results women diagnosed with breast cancer at a young age would want returned and why. We conducted 60 semi-structured, in-person individual interviews with women diagnosed with breast cancer at age 40 or younger. We examined interest in six types of incidental findings and reasons for interest or disinterest in each type. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Most participants were at least somewhat interested in all six result types, but strongest interest was in actionable results (i.e. variants affecting risk of a preventable or treatable disease and treatment response). Reasons for interest varied between different result types. Some participants were not interested or ambivalent about results not seen as currently actionable. Participants wanted to be able to choose what results are returned. Participants distinguished between types of individual genome sequencing results, with different reasons for wanting different types of information. The findings suggest that a focus on actionable results can be a common ground for all stakeholders in developing a policy for returning individual genome sequencing results.