Endometrial cancer kills black women 90% more than white women. The advanced disease stage at which black women acquire an endometrial cancer diagnosis is a primary reason for this gap, which cannot be explained by variations in health care access. For this study, researchers wanted to report black women with endometrial cancer’s prediagnostic experiences with symptoms and symptom disclosure.
This community-engaged qualitative study created an interview guide to collect data from 15 black women with endometrial cancer in the United States during semi-structured interviews. Interviews were performed either in person or over a secure conferencing platform. To discover emerging themes, an exploratory and descriptive content analysis was conducted with community involvement utilizing iterative rounds of inductive coding, case summaries, and co-analysis. The data was gathered from October 3, 2017, through April 15, 2019, and the descriptive content analysis was completed between October 11, 2017, and May 6, 2019.
Participants varied in age from 31 to 72 and self-identified as black or African American. The Puget Sound region of Washington had eight participants, California had two, while Alabama, Michigan, Louisiana, Georgia, and New York each had one. During the trial, twelve people received adjuvant therapy, indicating that they were either in the high-risk category or had an advanced-stage illness. At the time of symptom onset, 13 patients had health insurance, and all had chosen to get cancer therapy. Participants noted information gaps and silence regarding menopause, misreading of vaginal bleeding, and reactions by primary care providers that were not consistent with the risk of endometrial cancer among black women in the United States.