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
Robert Armbrust 1 , Sara Alavi 1 , Adak Pirmorady 1 , Frank Chen 1 , Nicoletta Colombo 2 , Murat Gultekin 3 , Charo Hierro 4 , Birthe Lemley 5 , Mansoor Raza Mirza 6 , Esra Urkmez 7 8 , Christina Fotopoulou 9 , Jutta Vinzent 10 , Antonio Gonzalez Martin 11 , Andrea Krull 12 , Judith Heepe 13 , Mathias Rose 14 , Jalid Sehouli 15
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.