Understanding the patient experience in nonsurgical management of endometrial cancer and complex atypical hyperplasia due to obesity: A qualitative analysis

Objectives

Patients with class 3 obesity (BMI ≥ 40) and significant medical comorbidities with complex atypical hyperplasia (CAH) and early-stage endometrial cancer (EC) present challenges in standard surgical management. Progestin therapy is an alternative used for patient-centered reasons, including the desire for uterine preservation or because surgery is not a safe option. Our objective was to gain insights into the patient experience when undergoing this treatment approach.

Methods

We identified and recruited patients who received oral or IUD progesterone in the last 5 years for EC or CAH. We conducted semi-structured phone interviews regarding patients’ experience with non-surgical management as well as decision-making factors to start progesterone and weight loss. Interviews were audio-recorded and transcriptions were analyzed for common themes.

Results

A total of 20 interviews were performed. We enrolled nine patients with CAH, eight with grade 1 EC, and three with grade 2 EC. The majority of patients (18/20) were managed with IUD. We identified the following 5 common themes support in diagnostic workup and long-term outcomes, autonomy in care, thoroughness in counseling, emotional impact of diagnosis, and perception of obesity as a defining identity.

Conclusion

The themes identified in the present study highlight the challenges and the stigma these patients face. It also demonstrates areas of opportunity in their counseling and care, which will help to build a more effective therapeutic relationship and ultimately lead to greater adherence in care.