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Expectations and preferences of patients with primary and relapsed ovarian cancer to maintenance therapy: A NOGGO/ENGOT-ov22 and GCIG survey (Expression IV)
  1. Irena Rohr1,
  2. Sara Alavi1,
  3. Rolf Richter1,
  4. Maren Keller1,
  5. Radoslav Chekerov1,
  6. Gülten Oskay-Özcelik2,
  7. Michaela Heinrich1,3,
  8. Cagatay Taskiran4,
  9. Florence Joly5,
  10. Regina Berger6,
  11. Andreas du Bois7,
  12. Andreja Gornjec8,
  13. Ignace Vergote9,
  14. Patriciu Achimas-Cadariu10,
  15. Domenica Lorusso11,
  16. Johanna Maenpaa12 and
  17. Jalid Sehouli1
  1. 1 Department of Gynecology, European Competence Center for Ovarian Cancer, Charité Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin, Charite, Germany
  2. 2 Private Practice, Private Practice for Gynecologic Oncology, Berlin, Germany
  3. 3 Alice Salomon University of Applied Science Berlin, Berlin, Germany
  4. 4 Department of Obsteterics and Gynecology, Division of Gynecologic Oncology On behalf of TRSGO: Turkish Society of Gynecologic Oncology, Koc University School of Medicine, Istanbul, Turkey
  5. 5 GINECO and Regional Centre Control Against Cancer Francois, Baclesse Caen, France
  6. 6 AGO-Austria and University Hospital for Gynaecology and Obstetrics, Medical University of Innsbruck, Innsbruck, Austria
  7. 7 Arbeitsgemeinschaft Gynäkologische Onkologie (AGO) Study Group and Kliniken Essen Mitte, Kliniken Essen Mitte, Essen, Germany
  8. 8 Gynecologic Oncology, Institute of Oncology Ljubljana, Ljubljana, Slovenia
  9. 9 Department of Oncology, Laboratory of Tumor Immunology and Immunotherapy, ImmunOvar Research Group, Katholieke Universiteit Leuven, Leuven, Belgium
  10. 10 University of Medicine and Pharmacy Iuliu Hatieganu Cluj-Napoca, Institute of Oncology Prof Dr. Ion Chiricuta Cluj-Napoca, Cluj-Napoca, Romania
  11. 11 MITO and Fondazione Policlinico Universitario A Gemelli IRCCS, Rome and Fondazione IRCCS Istituto Nazionale Die Tumori, Milan, Italy
  12. 12 Department of Obstetrics and Gynecology, NSGO and University of Tampere and Tampere University Hospital, Tampere, Finland
  1. Correspondence to Dr Irena Rohr, Gynaecology, Charite Universitatsmedizin Berlin, Berlin 10117, Germany; irena.rohr{at}


Background Maintenance therapy induces remission and prolongs disease free interval in primary and recurrent ovarian disease. For the treatment decision making process, aspects of quality of life and patients′ preferences are crucial, despite the fact that scientific data are lacking. Therefore, we conducted this European-wide study in patients with ovarian cancer.

Methods A 25 item questionnaire was provided to ovarian cancer patients via the internet or as a paper version in 10 European countries (Austria, Belgium, France, Germany, Italy, Romania, Slovenia, Finland, Turkey, and Spain). Data recorded were demographics, tumor stage, therapy after firstline and recurrent disease, preferences for administration, and expectations concerning maintenance therapy.

Results Overall, 1954 patients participated from September 2013 to March 2016; 42% had recurrent disease. Most patients (98%) with primary epithelial ovarian cancer underwent surgery followed by chemotherapy (91%). Almost one-third of participants (29%) were receiving maintenance therapy whereas 45% had only heard of it. For 70% of patients with primary epithelial ovarian cancer, they heard about maintenance therapy from their doctor, 10% heard about maintenance therapy from other patients, and 8% from the internet. The main source of information about maintenance therapy in patients with epithelial ovarian cancer relapse was from the treating physician (72%), from other patients (8%), and from the internet (7%). For patients undergoing maintenance therapy, the four most disturbing adverse effects were polyneuropathy (37%), nausea (36%), hair loss (34%), and vomiting (34%). The main objective of maintenance treatment, as perceived by patients, was to increase the chances of cure (73%), improvement in quality of life (47%), and delay in tumor growth (37%). Many patients were willing to undergo maintenance therapy until tumor progression (38%) and 39% would prefer oral administration. No significant differences were detected in the cross country subanalysis regarding expectations of maintenance therapy and patients with primary or relapsed ovarian cancer.

Conclusion Patients with ovarian cancer were willing to accept maintenance therapy of prolonged duration and preferred oral administration. There is still a gap between the efficacy of maintenance therapy and patient expectations. Patients need more information on the adverse effects and treatment goals of maintenance therapy to avoid misunderstandings.

  • gynecology
  • ovarian cancer
  • quality of life (PRO)/palliative care
  • ovarian neoplasms

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  • Contributors JS and IR designed the study. IR wrote the first version of the manuscript. MH and RR performed the data analysis and interpretation. All authors participated in the interpretation of the results, critically revised the paper, and approved the final version to be published.

  • Funding The survey ‘Expression IV’ was supported by an unrestricted grant from Boehringer Ingelheim and Amgen.

  • Competing interests FJ is on the advisory board and symposium of Astra Zeneca, Roche, Tesaro, Ipsen Pharma GmbH, Janssen, Pfizer, Bristol-Myers Squibb and MSD, outside the submitted work. RB reports personal fees from Roche and from AstraZeneca, outside the submitted work. AdB reports personal fees from Astra Zeneca, Roche, BioCard, Tesaro, Pfizer, Clovis, Genmab, and MSD, outside the submitted work. IV reports consulting or advisory role (institution) for Advaxis Inc, Eisai Inc, MSD Belgium, Roche NV, Genmab A/S, Genmab US, F Hoffmann-La Roche Ltd, Pharmamar, Millennium Pharmaceuticals, Clovis Oncology Inc, AstraZeneca NV, Tesaro Bio GmbH, Tesaro Inc, Oncoinvent AS, Immunen Inc; research funding (via KU Leuven) from Oncoinvent AS, Genmab A/S-Genmab BV; corporate sponsored research grants from Amgen, Roche, and Stichting teen Kanker; travel, accommodation, and expenses from Takeda Oncology, Pharmamar, Genmab, Roche, AstraZeneca, and Tesaro, outside the submitted work. DL reports grants and personal fees from Tesaro, personal fees from Astra Zeneca, grants and personal fees from Merck, grants and personal fees from Clovis, and personal fees from Merrimack, outside the submitted work. JM reports personal fees and non-financial support from Roche, and personal fees from Tesaro, AstraZeneca, and Clovis, outside the submitted work. JS reports honoraria from Astra Zeneca, Eisai, Clovis, Olympus, Johnson&Johnson, PharmaMar, Pfizer, TEVA, TESARO, and MSD; consulting or advisory role for Astra Zeneca, Clovis, Lilly, PharmaMar, Pfizer, Roche, TESARO, and MSD; research funding from Astra Zeneca, Clovis, Merck, Bayer, PharmaMar, Pfizer, TESARO, and MSD; travel, accommodation, and expenses from Astra Zeneca, Clovis, PharmaMar, Roche, Pfizer, TESARO, and MSD, outside the submitted work.

  • Patient consent for publication Not required.

  • Ethics approval The study was approved by each charité ethic committees and the respective national ethics committees.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary Information. Data are available upon reasonable request.