Study Protocol for the Social Interventions for Support During Treatment for Endometrial Cancer and Recurrence (SISTER) study: a community engaged national randomized trial.

Aim: Social isolation in cancer patients is correlated with prognosis and is a potential mediator of treatment completion. Black women with endometrial cancer (EC) are at increased risk for social isolation when compared with White patients. We developed the Social Interventions for Support during Treatment for Endometrial Cancer and Recurrence (SISTER) study to compare and evaluate interventions to address social isolation among Black women with high-risk EC in USA. The primary objective of the SISTER study is to determine whether virtual support interventions improve treatment completion compared with Enhanced Usual Care. Secondary objectives include comparing effectiveness virtual evidence-based interventions and evaluating barriers and facilitators to social support delivery. Patients & methods: This is a multi-site prospective, open-label, community-engaged randomized controlled trial, consisting of three intervention arms: enhanced usual care, facilitated support group and one-to-one peer support. Primary outcome will be measured using relative dose. Qualitative semi-structured interviews will be conducted with a subset of participants to contextualize the relative degree or lack thereof of social isolation, over time. Data analysis: Primary analysis will be based on an intent-to-treat analysis. Multivariable analysis will be performed to determine the effect of the intervention on the primary and secondary outcomes of interest, relative dose and social isolation score. Semi-structured interviews will be qualitatively analyzed using inductive and deductive approaches of content analysis. Discussion/conclusion: Endometrial cancer mortality disproportionately affects Black women, and social isolation contributes to this disparity. The SISTER study aims to identify whether and to what extent differing social support vehicles improve key outcomes for Black women in the United States with high-risk EC. Clinical Trial Registration: NCT04930159 (ClinicalTrials.gov).

A conceptual model of vulnerability to care delay among women at risk for endometrial cancer.

OBJECTIVE: Care delay may allow for cancer progression prior to treatment initiation. However, in endometrial cancer, quantitative data to support this hypothesis is mixed. Factors that cuase delay prior to clinical presentation are present among Black women, however the whether and how they present among White women, and thus how they may drive racial disparity is unknown. METHODS: In this qualitative study, from June 2019 to March 2020, we conducted in-depth semi-structured interviews among 17 White women with EC (34-73 years), living in the Northwest (11), West (2), Midwest (1), Southwest (1), and Northeast (2) U.S. regions, including six with high-risk and/or advanced stage endometrial cancer. An exploratory and descriptive content analysis was performed using iterative rounds of inductive coding, case summaries, and additional interviews to confirm emergent themes, followed by synthetic analysis of themes from a prior qualitative study conducted among Black women, which we analyzed for overlap and distinctions. RESULTS: There were critical points of overlap and distinction between Black and White women in four delay factors identified: menopause and endometrial cancer knowledge, prior negative healthcare experiences, prior/concurrent reproductive conditions, and healthcare provider response. Conceptualizing the care journey as a circular path demonstrates the potential for accumulation of delay that is dependent on underlying risk. CONCLUSION: We have identified four areas of vulnerability that are often unrecognized and difficult to assess in quantitative investigations of overall quality and co-occurring disparities in endometrial cancer care. With the addition of epidemiologic risk, we present a unified model of vulnerability to care delay in endometrial cancer that can be applied to future quantitative studies and ongoing clinical care.

Incorporating Measures of Structural Racism into Population Studies of Reproductive Health in the United States: A Narrative Review.

Purpose: Black women in the United States face poor outcomes across reproductive health measures-from pregnancy outcomes to gynecologic cancers. Racial health inequities are attributable to systemic racism, but few population studies of reproductive health outcomes integrate upstream measures of systemic racism, and those who do are limited to maternal and infant health outcomes. Advances in understanding and intervening on the pathway from racism to reproductive health outcomes are limited by a paucity of methodological guidance toward this end. We aim to fill this gap by identifying quantitative measures of systemic racism that are salient across reproductive health outcomes. Methods: We conducted a review of literature from 2000 to 2019 to identify studies that use quantitative measures of exposure to systemic racism in population reproductive health studies. We analyzed the catalog of literature to identify cohesive domains and measures that integrate data across domains. For each domain, we contextualize its use within population health research, describe metrics currently in use, and present opportunities for their application to reproductive health research. Results: We identified four domains of systemic racism that may affect reproductive health outcomes: (1) civil rights laws and legal racial discrimination, (2) residential segregation and housing discrimination, (3) police violence, and (4) mass incarceration. Multiple quantitative measures are available for each domain. In addition, a multidimensional measure exists and additional domains of systemic racism are salient for future development into distinct measures. Conclusion: There are quantitative measures of systemic racism available for incorporation into population studies of reproductive health that investigate hypotheses, including and beyond those related to maternal and infant health. There are also promising areas for future measure development, such as the child welfare system and intersectionality. Incorporating such measures is critical for appropriate assessment of and intervention in racial inequities in reproductive health outcomes.

"We Are a Powerful Movement": Evaluation of an Endometrial Cancer Education Program for Black Women.

BACKGROUND: U.S. Black women with endometrial cancer (EC) have a 90% higher mortality rate than White women, driven in part by advanced stage at diagnosis. Black women have expressed reasons for care-seeking delay: misattribution of postmenopausal bleeding, symptom endurance, and community silence regarding vaginal bleeding. OBJECTIVES: In this community-based participatory research study, we adapted, implemented, and evaluated an education program addressing these factors. METHODS: We adapted an evidenced-based education curriculum-Community Empowerment Partners (CEPs©)-using Public Health Critical Race Praxis and the Health Belief Model. Black EC survivors completed CEPs-EC training and committed to lead community sessions. Our mixed-methods evaluation measured baseline and follow-up knowledge (10-point scale) and social and clinical empowerment (three Likert-scaled items) and assessed change in each construct with linear mixed-effects models and Generalized Estimating Equation models, respectively. The process evaluation examined fidelity, feasibility, and acceptability using qualitative data from coaching and national peer educator calls, with directed content analysis. RESULTS: Thirteen ambassadors completed training; 10 completed community sessions with 109 total attendees, 62 with complete data. Among community participants, CEPs-EC participation was associated with increased knowledge of 2.02 points (95% confidence interval [CI], 1.06-2.99; p = 0.0001). Social empowerment increased (odds ratio, 8.85; 95% CI, 1.90-41.20), reinforced by qualitative data. There was no change in clinical empowerment. Process data illustrated facilitators of success: session tailoring, leveraging social networks, mentorship, and group-level motivation. CONCLUSIONS: This is the first intervention addressing EC survival among Black women. Results demonstrate efficacy in improving EC knowledge and empowerment, providing the evidence base for a larger public health campaign.

Assessment of Prediagnostic Experiences of Black Women With Endometrial Cancer in the United States.

Importance: Black women with endometrial cancer have a 90% higher mortality rate than white women with endometrial cancer. The advanced disease stage at which black women receive a diagnosis of endometrial cancer is a major factor in this disparity and is not explained by differences in health care access. Objective: To describe the prediagnostic experiences of symptoms and symptom disclosure among black women with endometrial cancer. Design, Setting, and Participants: This community-engaged qualitative study developed an interview guide to collect data during semistructured interviews among a sample of 15 black women with endometrial cancer in the United States. Interviews were conducted in person or via a secure conferencing platform. An exploratory and descriptive content analysis was performed using iterative rounds of inductive coding, case summaries, and coanalysis with community input to identify emergent themes. Data were collected from October 3, 2017, to April 15, 2019, and the descriptive content analysis was performed from October 11, 2017, to May 6, 2019. Main Outcomes and Measures: Beliefs, interpretations, and experiences of black women with endometrial cancer from symptom onset to diagnostic confirmation of cancer. Results: Participants included 15 women who self-identified as black or African American and ranged in age from 31 to 72 years. Eight participants lived in the Puget Sound region of Washington, 2 participants lived in California, and 1 participant each lived in Alabama, Michigan, Louisiana, Georgia, and New York. Twelve participants were receiving adjuvant therapy during the study, which indicated that they were either in a high-risk group and/or had advanced-stage disease. Thirteen participants had health insurance at the time of symptom onset, and all participants had elected to receive cancer treatment. Participants described knowledge gaps and silence about menopause, misinterpretation of vaginal bleeding, and responses by first-line health care practitioners that were not aligned with the risk of endometrial cancer among black women in the United States. Conclusions and Relevance: The responses of interviewed black women with endometrial cancer suggest that several mechanisms may be associated with a delay in care before diagnosis among this high-risk population and represent modifiable factors that may be useful in the development of targeted interventions to improve the rates of early diagnosis among black women with endometrial cancer.

Should Race Be Used as a Variable in Research on Preterm Birth?

Racial variations in preterm birth (PTB) outcomes are well described, but causal mechanisms linking race and PTB are not. In clinical research, race is typically treated as representing fixed biological traits. In reality, race is a social construct that approximates lived experiences of historical and ongoing systematic discrimination and, in the case of PTB, particular stressors of black womanhood and reproduction. These experiences are embodied as adverse multigenerational health outcomes. Race thus presents a dilemma for researchers. Conflating race with genetics enacts harm, but excluding the race variable produces irrelevant research. Instead, we must consider race in an ecosocial context. PTB is fertile ground for expanding research approaches to respect the history, reality, and implications of race in the United States.