The aim of this survey was to increase the knowledge on the characteristics and health concerns of long-term survivors (LTS; survival > 5 years) after ovarian cancer in order to tailor follow-up care. This international survey was initiated by the NOGGO and was made available to members of ENGOT and GCIG. The survey is anonymous and consists of 68 questions regarding sociodemographic, medical (cancer) history, health concerns including distress, long-term side effects, and lifestyle. For this analysis, 1044 LTS from 14 countries were recruited. In total, 58% were diagnosed with FIGO stage III/IV ovarian cancer and 43.4% developed recurrent disease, while 26.0% were receiving cancer treatment at the time of filling in the survey. LTS who survived 5-10 years self-estimated their health status as being significantly worse than LTS who survived more than 10 years (p = 0.034), whereas distress also remained high 10 years after cancer diagnosis. Almost half of the cohort (46.1%) reported still having symptoms, which were mainly lymphedema (37.7%), fatigue (23.9%), pain (21.6%), polyneuropathy (16.9%), gastrointestinal problems (16.6%), and memory problems (15.5%). Almost all patients (94.2%) regularly received follow-up care. Specialized survivorship care with a focus on long-term side effects, lifestyle, and prevention should be offered beyond the typical five years of follow-up care.

Arbeitsgemeinschaft Gynaekologische Onkologie Austria 6020 Innsbruck Austria

Belgium and Luxembourg Gynaecological Oncology Group 3000 Leuven Belgium

Catalan Institute of Oncology IDIBELL L'Hospitalet Barcelona 08908 Barcelona Spain

Central and Eastern European Gynecologic Oncology Group 128 51 Prague Czech Republic

Department of Gynaecology and Obstetrics Klinikum Chemnitz 09116 Chemnitz Germany

Department of Gynaecology Obstetrics and Neonatology 1st Faculty of Medicine Charles University and General University Hospital Prague 12 108 Prague Czech Republic

Department of Gynecologic Oncology Cukurova University 01250 Adana Turkey

Department of Gynecology and Gynecologic Oncology University Hospital of Basel 4056 Basel Switzerland

Department of Gynecology and Obstetrics Ordensklinikum Barmherzige Schwestern Linz 4020 Linz Austria

Department of Gynecology and Obstetrics Technische Universität Dresden 01307 Dresden Germany

Department of Gynecology with Center for Oncological Surgery Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin Charité Universitätsmedizin Berlin 13353 Berlin Germany

Department of Obstetrics and Gynecology Innsbruck Medical University 6020 Innsbruck Austria

Department of Women's Health University Hospital Tübingen 72076 Tübingen Germany

Division of Gynaecological Oncology Leuven Cancer Institute University Hospitals Leuven 3000 Leuven Belgium

Frauenklinik Fürth 90766 Fürth Germany

General University Hospital Prague 12 808 Prague Czech Republic

Grupo Español de Investigación en Cáncer de Ovario 28003 Madrid Spain

Gynecological Oncology Department Wroclaw Medical University 50 367 Wroclaw Poland

Institut Català d'Oncologia Medical Oncology Department 17007 Girona Spain

Institute of Biometry and Clinical Epidemiology Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin Charité Universitätsmedizin Berlin 10117 Berlin Germany

Institute of Oncology Prof Dr 1 Chiricuta Cluj Napoca University of Medicine and Pharmacy Iuliu Hatieganu 400015 Cluj Napoca Romania

Medical Sciences Department Universitat de Girona 17003 Girona Spain

North Eastern German Society for Gynecological Oncology 13359 Berlin Germany

Oncological Gynecology Department Lower Silesian Oncology Pulmonology and Hematology Center 53 413 Wroclaw Poland

Pan Arabian Research Society of Gynecological Oncology 13353 Berlin Germany

Precision Oncology Group Institut d'Investigació Biomèdica de Girona 17007 Girona Spain

Swiss GO Trial Group 4031 Basel Switzerland

Turkish Society of Gynecologic Oncology Ovecler 06450 Ankara Turkey

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