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Original research
Results of the interprofessional and interdisciplinary Berlin round table on patient-reported outcomes, quality of life, and treatment expectations of patients with gynecological cancer under maintenance treatment
  1. Robert Armbrust1,
  2. Sara Alavi1,
  3. Adak Pirmorady1,
  4. Frank Chen1,
  5. Nicoletta Colombo2,
  6. Murat Gultekin3,
  7. Charo Hierro4,
  8. Birthe Lemley5,
  9. Mansoor Raza Mirza6,
  10. Esra Urkmez7,8,
  11. Christina Fotopoulou9,
  12. Jutta Vinzent10,
  13. Antonio Gonzalez Martin11,
  14. Andrea Krull12,
  15. Judith Heepe13,
  16. Mathias Rose14 and
  17. Jalid Sehouli1
  1. 1Department of Gynecology, Charité University Hospital Berlin, Berlin, Germany
  2. 2Medical Gynecologic Oncology Unit, University of Milan Bicocca; European Institute of Oncology, Milan, Italy
  3. 3Cancer Control Department, Turkish Ministry of Health, Ankara, Turkey
  4. 4Asociación de Afectados por Cáncer de Ovario, Barcelona, Spain
  5. 5KIU – patientforeningen Kræft, Copenhagen, Denmark
  6. 6Department of Oncology, Rigshospitalet; Copenhagen University Hospital, Copenhagen, Denmark
  7. 7European Society of Gynaecological Oncology-European Network of Gynecological Cancer Advocacy Groups (ESGO-ENGAGe) Chair, Geneva, Switzerland
  8. 8Kanserle Dans, Ankara, Turkey
  9. 9Gynaecologic Oncology, Imperial College London Faculty of Medicine, London, UK
  10. 10German Ovarian Cancer Foundation, Berlin, Germany
  11. 11Medical Oncology, Clinica Universidad de Navarra, Madrid, Spain
  12. 12Eierstockkrebs Deutschland e.V, Neumünster, Germany
  13. 13Department of Nursery, Charité University Hospital Berlin, Berlin, Germany
  14. 14Department of Psychosomatic Medicine, Charité University Hospital Berlin, Berlin, Germany
  1. Correspondence to Professor Jalid Sehouli, Department of Gynecology, Charité University Hospital Berlin, Berlin 10117, Germany; jalid.sehouli{at}charite.de

Abstract

Background Patients’ reported outcomes and their perspectives around their therapeutic management is a field of continuously increasing relevance in gynecological oncology. We report the results of the Berlin dialog on seven patient-reported parameters and outcomes concerning chemotherapy and maintenance treatment in patients with gynecological cancer.

Methods Key opinion leaders in gynecological oncology from different European counties and representatives of leading patients’ advocate groups in Berlin held a consensus meeting in Berlin on April 6, 2019. Seven topics of interest were identified in advance around quality of life, iatrogenic toxicity, treatment decision-making processes, sexuality, participation in clinical trials, second opinion, and long-term survivors with the the following standard operating procedure for processing and discussion: (1) agreement on its relevance; (2) literature review, and (3) discussion and consensus statements.

Results All main topics reached a consensus approval. The defined statements emphasized the importance of patients’ role in incorporating and establishing quality of life as an outcome parameter in clinical trials. Furthermore, discussants raised the importance of identifying new tools for reflecting patient-reported iatrogenic toxicity as well as emphasizing patients’ rights in providing personal information, access to second opinion in the decision-making process, and their participation in clinical trials.

Conclusion The results of this round table meeting could help redefine perspectives on the discussed topics and the importance for therapeutic management as well as for trial designs.

  • Quality of Life (PRO)/Palliative Care
  • medical oncology
  • ovarian cancer

https://doi.org/10.1136/ijgc-2019-001070

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    Footnotes

    • Twitter @asociacionASACO

    • Contributors RA: conceptualization, moderation and organisation of the round table, summarizing, writing, editing of manuscript. SA: presenter at the round table, expert for QoL in trials. AP: literature research, data acquisition, manuscript writing. FC: manuscript writing. NC: expert in gynecological oncology, conceptualization, manuscript editing. AGM: expert in gynecological oncology, conceptualization, manuscript editing. MG: expert in gynecological oncology, conceptualization, manuscript editing. MRM: expert in gynecological oncology, conceptualization, manuscript editing. JS: expert in gynecological oncology, conceptualization, manuscript editing, corresponding author. CH: presenter at round table, patient advocacy group representative, conceptualization, manuscript editing. BL: presenter at round table, patient advocacy group representative, conceptualization, manuscript editing. EU: presenter at round table, patient advocacy group representative, conceptualization, manuscript editing. CF: conceptualization, manuscript editing. AK: presenter at round table, patient advocacy group representative, conceptualization, manuscript editing. JV: presenter at round table, patient advocacy group representative, conceptualization, manuscript editing. MR: conceptualization, manuscript editing. JH: nursing specialist, manuscript editing, conceptualization of the round table.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Patient consent for publication Not required.

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

    • Data availability statement Data sharing not applicable as no datasets generated and/or analysed for this study. Data are available upon reasonable request. No data are available. Data will be available upon request.