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

Question What are the beliefs, interpretations, and experiences of black women with endometrial cancer with regard to vaginal bleeding and the disclosure of this symptom in health care settings? Findings In this qualitative study of the interview responses of 15 black women with endometrial cancer in the United States, participants described knowledge gaps and silence about menopause, misinterpretation of vaginal bleeding, and responses from first-line health care practitioners that were not aligned with the risk of endometrial cancer among black women in the United States. Meaning Among participants in this study, several aspects of the prediagnostic experience suggested novel 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. 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. This qualitative study uses semistructured interviews and an adapted health belief model to describe the beliefs, interpretations, and experiences of symptom onset, symptom disclosure, and diagnosis among black women with endometrial cancer.