751P - Patients with endometrial cancer: Expectations and understanding of genetic counseling and hereditary carcinomas - First results of an international NOGGO/GCIG/ENGOT survey (EXPRESSION XI/IMPROVE)

Background

With the introduction of molecular classification of endometrial cancer (EC), the importance of Lynch syndrome and hereditary EC has been emphasized. For a successful conduct of EC-therapy, the patient’s expectations, preferences, and needs should be considered. The aim of this survey was to evaluate the status quo and the patients' understanding of their own condition, including genetic counseling.

Methods

We developed an international online and paper survey with 80 questions for endometrial cancer patients. It included questions on demographics, medical history, tumor classification, therapy, preferences and expectations concerning treatment modalities.

Results

To date, 656 endometrial cancer patients (mean age: 65.0 [20.0; 92.0] years) completed the survey from a total of seven countries, mainly from Germany (56.1%) and Switzerland (40.5%). The majority of patients (77.4 %) were in follow-up and not receiving current cancer therapy, while 16.1 % were still receiving treatment, of which 6.4 % were due to cancer recurrence. Overall, 14.3% of the patients suffered from a recurrent disease. One third of patients (35.1%) reported that their tumor had been tested for molecular classification, and more than half (56.9%) did not know if this had occurred. Genetic counseling was only given to 21.7% of patients, 63.1% did not receive any form of it. From the patients understanding, 19.6% believe that a family history or genetic alteration could be responsible for tumorigenesis – 30.6% do not know. On the contrary, 68.1% of the patients answered that there were cases of cancer in their blood relatives – 19.1% had one or more cases of colorectal cancer in the family history, 13.9% endometrial, 10.9% gastric and 3.9% ovarian cancer. 16.4% of all patients had a second malignancy in their medical history. In general, 32.4 % of patients would like doctors to spend more time on explanations.

Conclusions

This survey underlines the great need for better access to molecular profiling and genetic counseling in women with endometrial cancer. Programs should be developed to empower patients and to educate medical staff.

Clinical trial identification

DRKS-ID: DRKS00025954.

Editorial acknowledgement

Legal entity responsible for the study

NOGGO e.V.

Funding

GSK Research & Development Limited.

Disclosure

J. Sehouli: Financial Interests, Institutional, Research Funding: AstraZeneca, Clovis Oncology, Merck, Pfizer, Tesaro, MSD Oncology, Roche, Bayer, PharmaMar; Financial Interests, Advisory Board: AstraZeneca, Clovis Oncology, PharmaMar, Merck, Pfizer, Tesaro, MSD Oncology, Lilly, Novocure, J&J, Roche, Ingress Health, Riemser, Sobi, GSK, Novartis; Financial Interests, Other, Honoraria, Travel, Accommodation, Expenses: AstraZeneca, Clovis Oncology, Olympus Medical Systems, PharmaMar, Tesaro, MSD Oncology; Financial Interests, Other, Honoraria: Eisai, J&J, Pfizer, Teva, GSK, Bayer; Financial Interests, Advisory Board, Travel, Accommodation, Expenses: Roche Pharma AG. M.L. Heubner: Financial Interests, Advisory Board: GSK, AstraZeneca, Roche; Financial Interests, Speaker, Consultant, Advisor: MSD, Intuitive, Olympus, GSK, AstraZeneca, Roche; Financial Interests, Leadership Role: SERGS (Society of European Gynaecological Surgery SERGS). All other authors have declared no conflicts of interest.