Delays, fragmentation, and desire for alternatives: A qualitative study of the patient experience through diagnosis and treatment of endometrial cancer

Abstract

Background

Black patients in the United States have twice the mortality rate from endometrial cancer as their White peers. Washington D.C. has the highest endometrial cancer mortality rate in the nation. The study objective was to assess barriers and facilitators of care in the context of Black patients' experiences during diagnosis, referral, and management of endometrial cancer in Washington D.C.

Methods

Black patients with an endometrial cancer diagnosis who had completed surgery and adjuvant chemotherapy and/or radiation therapy were recruited over a 16-month period. Hour-long semi-structured interviews were conducted, recorded and transcribed. Qualitative analysis of the transcripts was performed and themes distilled from patient experience.

Results

There were 22 patient transcripts that were included in the qualitative analysis. Three core themes related to barriers included: delays to accessing care, fragmentation in the delivery of healthcare, and desire for alternatives to standard of care hysterectomy. Three core themes related to facilitators included: positive role of nurse navigators, streamlined referral process, thorough counseling from surgeon.

Conclusion

Barriers and facilitators to care impact the experience of Black patients undergoing care for endometrial cancer, which may contribute to disparities in outcomes. Future research can leverage patient-identified facilitators to address inequities in endometrial cancer outcomes.