Patients with endometrial cancer: Expectations and preferences towards therapy and quality of life—First results of an international survey (NOGGO, ENGOT, GCIG - IMPROVE/EXPRESSION XI).
Authors: Chinczewski Lukas , Krause Catherine , Zocholl Dario , Boer Jolijn , Zwimpfer Tibor , Liebrich Clemens , Adámková Petra , Atallah David M. , Al-Rubaish Sarah Sultan , Stanculeanu Dana Lucia , Kaidarova Dilyara , Berek Jonathan S. , Lafleur Judith , Barretina-Ginesta Maria-Pilar , Havelka Pavel , Pietzner Klaus , Saner Flurina , Fechner Susanne , Heinzelmann-Schwarz Viola A. , Sehouli Jalid 
Published: June 2023

e24120

Background: In recent years, the understanding of endometrial cancer shifted, leading to a change in therapy strategies including targeted therapies. For a successful conduction of therapy, a patient’s expectations, preferences, and needs should be considered. The aim of this study was to define these factors. Methods: We conducted an international 80 item survey in paper-form and via the internet for endometrial cancer patients. The data recorded were demographics, tumor stage, therapy, recurrence status, comorbidities, preferences and expectations concerning therapy modalities. Results: Between 12/2021 and 12/2022, 568 endometrial cancer patients could be recruited from seven different countries – with the majority being from Germany (54.3%) and Switzerland (44.0%). Median age was 66.0 [58.0; 73.0] years. While most patients (79.7%) were in follow-up care with no current anti-cancer therapy, 20.3% were still receiving treatment, of which 6.2% were due to cancer recurrence. In total, 14.6% of all patients suffered a relapse. More than two thirds were concomitantly suffering from high blood pressure (39.6%) and/or joint pain (arthrosis, arthritis) (30.5%) – a fifth (21.3%) did not have any pre-existing illnesses. On average, the patients took 2.9 (±3.0) different drugs regularly for their comorbidities. The distribution of initial tumor status was 62.5% for FIGO I, and 16.6%, 15.1% and 5.8% for FIGO II-IV, respectively. A third of the patients (34.7%) reported that their tumor was tested for molecular classification, more than half (56.9%) did not know if this had occurred. After first being diagnosed, most patients (96.6%) underwent an operation, 39.5% received radiation therapy, 27.6% chemotherapy, 7.1% hormonal treatment and 3.6% immunotherapy. More than a third (38.1%) of all patients would be interested in participating in clinical studies, less than half (43.6%) were offered this option. To receive information about their disease, 36.8% use the internet, but most (91.5%) think that the doctors’ expertise is the most important source of information. More than half (55.0%) see a need for more information material. To improve treatment, patients would like doctors to spend more time on explanations (31.2%), to better cooperate with each other (21.0%) and for the therapy not to lead to hair loss (20.6%). The maximum time of therapy, that most patients are willing to tolerate if everything goes well is 6-12 months (41.3%) followed by the time period until recurrence (34.4%). Conclusions: Women with endometrial cancer would benefit from significant improvement in the management of endometrial cancer, including the provision of information and educational materials and access to clinical trials. Clinical trial information: DRKS00025954 .