G Oskay-Özcelik1, S Alavi1, R Richter2, M Keller3, R Chekerov1, S C Cecere4, G Cormio5, F Joly6, J E Kurtz7, A du Bois8, M Maciejewski9, M Jedryka10, I Vergote11, E Van Nieuwenhuysen11, A Casado12, C Mendiola13, P Achimas-Cadariu14, C Vlad14, D Reimer15, A G Zeimet15, M Friedlander16, J Sehouli17. 1. Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Department of Gynecology, Charité European Competence Center for Ovarian Cancer, Berlin; North-Eastern German Society of Gynecological Oncology (NOGGO), Berlin, Germany. 2. Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Department of Gynecology, Charité European Competence Center for Ovarian Cancer, Berlin. 3. North-Eastern German Society of Gynecological Oncology (NOGGO), Berlin, Germany. 4. Division of Medical Oncolog, Department of Uro-Gynaecological Oncology, Istituto Nazionale Tumori IRCCS "Fondazione G. Pascale", Naples, Italy. 5. Department of Biomedical Science and Human Oncolog, Obstetrics and Gynecology Unit, University of Bari, Bari, Italy. 6. Department of Medical Oncolog, Centre Francois Baclesse, Universite Basse Normandie, Caen, France. 7. Oncology and Hematology, Hôpitaux Universitaires de Strasbourg, Strasbourg. 8. Deptartment of Gynecology and Gynecologic Oncology, Kliniken Essen Mitte (KEM), Essen, Germany. 9. Dolnoslaskie Centrum onkologii/Oddzial Ginekologii Onkologicznej, Wroclaw, Poland. 10. Department of Oncology and Gynaecological Oncology Clinic, Wroclaw Medical University, Wroclaw, Poland. 11. Division of Gynaecological Oncol, Leuven Cancer Institute, Department of Gynaecology and Obstetrics, Universitaire Ziekenhuizen Leuven, Katholieke Universiteit Leuven, Leuven, Belgium. 12. Department of Medical Oncology, Hospital Clínico Universitario San Carlos, Madrid, Spain. 13. University Hospital 12 de Octubre, Madrid, Spain. 14. Department of Surgery, The Oncology Institute Ion Chiricuţă, Cluj-Napoca, Romania; Department of Surgery and Gynecologic Oncology, Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania. 15. Department of Obstetrics and Gynecology, Medical University of Innsbruck, Innsbruck, Austria. 16. Prince of Wales Clinical School, University of New South Wales, Sydney, Australia. 17. Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Department of Gynecology, Charité European Competence Center for Ovarian Cancer, Berlin; North-Eastern German Society of Gynecological Oncology (NOGGO), Berlin, Germany. Electronic address: jalid.sehouli@charite.de.
Abstract
Backround: The primary aim of this study was to investigate information needs and treatment preferences of patients with ovarian cancer, focusing especially on physician-patient relationship and treatment. Patients and methods: A questionnaire was developed based on the experiences of the national German survey 'Expression II', and was provided to patients with ovarian cancer either at initial diagnosis or with recurrent disease via Internet (online-version) or as print-out-version. Results: From December 2009 to October 2012, a total of 1830 patients with ovarian cancer from eight European countries (Austria, Belgium, France, Germany, Italy, Poland, Romania, Spain) participated, 902 (49.3%) after initial diagnosis and 731 (39.9%) with recurrent ovarian cancer. The median age was 58 years (range 17-89). Nearly all patients (96.2%) had experienced upfront surgery followed by first-line chemotherapy (91.8%). The majority of patients were satisfied with the completeness and comprehensibility of the explanation about the diagnosis and treatment options. The three most important aspects, identified by patients to improve the treatment for ovarian cancer included: 'the therapy should not induce alopecia' (42%), 'there must be more done to counter fatigue' (34.5%) and 'the therapy should be more effective' (29.7%). Out of 659 (36%) patients, who were offered participation in a clinical trial, 476 (26%) were included. Conclusion: This study underlines the high need of patients with ovarian cancer for all details concerning treatment options irrespective of their cultural background, the stage of disease and the patient's age. Increased information requirements regarding potential side effects and treatment alternatives were recorded. Besides the need for more effective therapy, alopecia and fatigue are the most important side effects of concern to patients.
Backround: The primary aim of this study was to investigate information needs and treatment preferences of patients with ovarian cancer, focusing especially on physician-patient relationship and treatment. Patients and methods: A questionnaire was developed based on the experiences of the national German survey 'Expression II', and was provided to patients with ovarian cancer either at initial diagnosis or with recurrent disease via Internet (online-version) or as print-out-version. Results: From December 2009 to October 2012, a total of 1830 patients with ovarian cancer from eight European countries (Austria, Belgium, France, Germany, Italy, Poland, Romania, Spain) participated, 902 (49.3%) after initial diagnosis and 731 (39.9%) with recurrent ovarian cancer. The median age was 58 years (range 17-89). Nearly all patients (96.2%) had experienced upfront surgery followed by first-line chemotherapy (91.8%). The majority of patients were satisfied with the completeness and comprehensibility of the explanation about the diagnosis and treatment options. The three most important aspects, identified by patients to improve the treatment for ovarian cancer included: 'the therapy should not induce alopecia' (42%), 'there must be more done to counter fatigue' (34.5%) and 'the therapy should be more effective' (29.7%). Out of 659 (36%) patients, who were offered participation in a clinical trial, 476 (26%) were included. Conclusion: This study underlines the high need of patients with ovarian cancer for all details concerning treatment options irrespective of their cultural background, the stage of disease and the patient's age. Increased information requirements regarding potential side effects and treatment alternatives were recorded. Besides the need for more effective therapy, alopecia and fatigue are the most important side effects of concern to patients.
Authors: Yeh Chen Lee; Madeleine T King; Rachel L O'Connell; Anne Lanceley; Florence Joly; Felix Hilpert; Alison Davis; Felicia T Roncolato; Aikou Okamoto; Jane Bryce; Paul Donnellan; Amit M Oza; Elisabeth Avall-Lundqvist; Jonathan S Berek; Jonathan A Ledermann; Dominique Berton; Jalid Sehouli; Amanda Feeney; Marie-Christine Kaminsky; Katrina Diamante; Martin R Stockler; Michael L Friedlander Journal: Int J Gynecol Cancer Date: 2022-06-06 Impact factor: 4.661
Authors: Amit M Oza; Domenica Lorusso; Carol Aghajanian; Ana Oaknin; Andrew Dean; Nicoletta Colombo; Johanne I Weberpals; Andrew R Clamp; Giovanni Scambia; Alexandra Leary; Robert W Holloway; Margarita Amenedo Gancedo; Peter C Fong; Jeffrey C Goh; David M O'Malley; Deborah K Armstrong; Susana Banerjee; Jesus García-Donas; Elizabeth M Swisher; David Cella; Juliette Meunier; Sandra Goble; Terri Cameron; Lara Maloney; Ann-Christin Mörk; Josh Bedel; Jonathan A Ledermann; Robert L Coleman Journal: J Clin Oncol Date: 2020-08-24 Impact factor: 44.544