Murat Gultekin1,2, Sertac Ak3,4, Ali Ayhan5, Aleksandra Strojna6, Andrei Pletnev7, Anna Fagotti8, Anna Myriam Perrone9, B Emre Erzeneoglu1, B Esat Temiz1, Birthe Lemley2,10, Burcu Soyak1, Cathy Hughes11,12, David Cibula13, Dimitrios Haidopoulos14, Donal Brennan15, Edoardo Cola8, Elzbieta van der Steen-Banasik16, Esra Urkmez2,17, Huseyin Akilli5, Ignacio Zapardiel18, Icó Tóth2,19, Jalid Sehouli20, Kamil Zalewski2,21,22,23, Kiarash Bahremand24, Luis Chiva25, Mansoor Raza Mirza26, Maria Papageorgiou2,27, Novak Zoltan24, Petra Adámková2,28, Philippe Morice29, Sonia Garrido-Mallach18, Utku Akgor1, Vasilis Theodoulidis14, Zafer Arik30, Karina D Steffensen2,31,32,33, Christina Fotopoulou12. 1. Faculty of Medicine, Department of Obstetrics and Gynecology, Division of Gynaecological Oncology, Hacettepe University, Ankara, Turkey. 2. European Society of Gynaecological Oncoloy (ESGO, European Network of Gynaecological Cancers Advocacy Groups (ENGAGe) Executive Group, Prague, Czech Republic. 3. Stress Assesment and Research Center (STAR, Hacettepe University, Ankara, Turkey. 4. Faculty of Medicine, Department of Psychiatry, Hacettepe University, Ankara, Turkey. 5. Faculty of Medicine, Department of Obstetrics and Gynecology, Division of Gynaecological Oncology, Baskent University, Ankara, Turkey. 6. Department of Gynecological Surgery and Gynecological Oncology of Adults and Adolescents, Pomeranian Medical University, Szczecin, Poland. 7. Department of Gynecologic Oncology, N.N. Alexandrov National Cancer Center of Belarus, Minsk, Belarus. 8. Fondazione Policlinico Universitario A. Gemelli IRCCS, Catholic University of the Sacred Heart, Rome, Italy. 9. Sant Orsola-Malpighi Hospital, Bologna, Italy. 10. KIU - Patient Organisation for Women with Gynaecological Cancer, Copenhagen, Denmark. 11. Ovacome - Ovarian Cancer Support Charity, London, UK. 12. Department of Gynecology, Imperial College London, NHS Trust London, London, UK. 13. Department of Obstetrics and Gynecology, Gynecologic Oncology Center, First Faculty of Medicine, Charles University and General University Hospital, Prague, Czech Republic. 14. Department of Obstetrics and Gynecology, Alexandra Hospital, University of Athens, Athens, Greece. 15. Department of Gynaecological Oncology, University College Dublin (UCD) School of Medicine, Catherine McAuley Research Centre, Mater University Hospital, Dublin, Ireland. 16. Radiotherapy Institute, Arnhem, The Netherlands. 17. Dance With Cancer Society, Ankara, Turkey. 18. Gynecologic Oncology Unit, La Paz University Hospital-IdiPAZ, Madrid, Spain. 19. Mallow Flower Foundation, Budapest, Hungary. 20. Department of Gynecology with Center for Oncological Surgery, Charité-University Hospital, Berlin, Germany. 21. Department of Gynecological Oncology, Hollycross Cancer Center, Kielce, Poland. 22. Department of Molecular and Translational Oncology, Maria Sklodowska-Curie National Research Institute of Oncology, Warsaw, Poland. 23. Department of Gynaecological Oncology, Barts Health NHS Trust, London, UK. 24. Department of Gynaecology, National Institute of Oncology, Budapest, Hungary. 25. Clinica Universidad de Navarra, Madrid, Spain. 26. Department of Oncology, The Finsen Centre, Rigshospitalet - Copenhagen University Hospital, Copenhagen, Denmark. 27. K.E.F.I. Cancer Society, Athens, Greece. 28. Onko Unie Cancer Society, Prague, Czech Republic. 29. Department of Surgery, Institute Gustave Roussy, Villejuif, France. 30. Faculty of Medicine, Department of Medical Oncology, Hacettepe University, Ankara, Turkey. 31. Department of Oncology, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark. 32. Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark. 33. Center for Shared Decision Making, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark.
Abstract
BACKGROUND: The impact of the COVID-19 pandemic on European gynaecological cancer patients under active treatment or follow-up has not been documented. We sought to capture the patient perceptions of the COVID-19 implications and the worldwide imposed treatment modifications. METHODS: A patient survey was conducted in 16 European countries, using a new COVID-19-related questionnaire, developed by ENGAGe and the Hospital Anxiety & Depression Scale questionnaire (HADS). The survey was promoted by national patient advocacy groups and charitable organisations. FINDINGS: We collected 1388 forms; 592 online and 796 hard-copy (May, 2020). We excluded 137 due to missing data. Median patients' age was 55 years (range: 18-89), 54.7% had ovarian cancer and 15.5% were preoperative. Even though 73.2% of patients named cancer as a risk factor for COVID-19, only 17.5% were more afraid of COVID-19 than their cancer condition, with advanced age (>70 years) as the only significant risk factor for that. Overall, 71% were concerned about cancer progression if their treatment/follow-up was cancelled/postponed. Most patients (64%) had their care continued as planned, but 72.3% (n = 892) said that they received no information around overall COVID-19 infection rates of patients and staff, testing or measures taken in their treating hospital. Mean HADS Anxiety and Depression Scores were 8.8 (range: 5.3-12) and 8.1 (range: 3.8-13.4), respectively. Multivariate analysis identified high HADS-depression scores, having experienced modifications of care due to the pandemic and concern about not being able to visit their doctor as independent predictors of patients' anxiety. INTERPRETATION: Gynaecological cancer patients expressed significant anxiety about progression of their disease due to modifications of care related to the COVID-19 pandemic and wished to pursue their treatment as planned despite the associated risks. Healthcare professionals should take this into consideration when making decisions that impact patients care in times of crisis and to develop initiatives to improve patients' communication and education.
BACKGROUND: The impact of the COVID-19 pandemic on European gynaecological cancer patients under active treatment or follow-up has not been documented. We sought to capture the patient perceptions of the COVID-19 implications and the worldwide imposed treatment modifications. METHODS: A patient survey was conducted in 16 European countries, using a new COVID-19-related questionnaire, developed by ENGAGe and the Hospital Anxiety & Depression Scale questionnaire (HADS). The survey was promoted by national patient advocacy groups and charitable organisations. FINDINGS: We collected 1388 forms; 592 online and 796 hard-copy (May, 2020). We excluded 137 due to missing data. Median patients' age was 55 years (range: 18-89), 54.7% had ovarian cancer and 15.5% were preoperative. Even though 73.2% of patients named cancer as a risk factor for COVID-19, only 17.5% were more afraid of COVID-19 than their cancer condition, with advanced age (>70 years) as the only significant risk factor for that. Overall, 71% were concerned about cancer progression if their treatment/follow-up was cancelled/postponed. Most patients (64%) had their care continued as planned, but 72.3% (n = 892) said that they received no information around overall COVID-19 infection rates of patients and staff, testing or measures taken in their treating hospital. Mean HADS Anxiety and Depression Scores were 8.8 (range: 5.3-12) and 8.1 (range: 3.8-13.4), respectively. Multivariate analysis identified high HADS-depression scores, having experienced modifications of care due to the pandemic and concern about not being able to visit their doctor as independent predictors of patients' anxiety. INTERPRETATION: Gynaecological cancer patients expressed significant anxiety about progression of their disease due to modifications of care related to the COVID-19 pandemic and wished to pursue their treatment as planned despite the associated risks. Healthcare professionals should take this into consideration when making decisions that impact patients care in times of crisis and to develop initiatives to improve patients' communication and education.
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