Perspectives, fears and expectations of patients with gynaecological cancers during the COVID‐19 pandemic: A Pan‐European study of the European Network of Gynaecological Cancer Advocacy Groups (ENGAGe)

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 A nxiety and D epression 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.

The tumor patient in the COVID-19 pandemic–an interview-based study of 30 patients undergoing systemic antiproliferative therapy

“…While it was initially expected that more patients would discontinue treatment [ 16 ], the new safety precautions and hygiene regulations seem to have provided patients with a sufficient feeling of safety to avoid discontinuation of their antiproliferative therapy. This is in line with the results of a survey of gynecological patients in May 2020, who wanted to continue their tumor therapy despite an increased risk and the fear of an infection with COVID-19 [ 17 ]. DGHO also considers that the benefits of meaningful and planned chemotherapy are higher than the risks of COVID-19 infection [ 2 ].…”

“…Besides family members, the attending hematologists/oncologists played an important role in helping patients cope with the COVID-19 pandemic. This underlines the need for regular doctor-patient contact within the pandemic-related restrictions [ 17 ].…”

Impact of COVID-19 on quality of life in people with epilepsy, and a multinational comparison of clinical and psychological impacts

“…These differences might also be related to the cultural differences in these countries, which influence the national policy and individual reaction toward the pandemic, but also can be disease specific [20] . As a comparison, we found different patterns in cancer studies during the pandemic, in which the rates of depression and anxiety were lower in Malaysia but not in China, whereas for European countries the rates were high but not in USA [21] , [22] , [23] , [24] . Stress or anxiety was commonly associated with seizure worsening [4] , [5] , [6] , [9] , [11] , but not depression.…”

Cancer Treatment During COVID-19: A Qualitative Analysis of Patient-Perceived Risks and Experiences with Virtual Care

“…For most, delaying or interrupting their care until after the COVID-19 crisis could lead to under-managed disease and worse outcomes ( 4 ). Yet, some patients feared exposure to COVID-19 in hospitals and were confused about symptoms and infection risk ( 5 , 6 ); some also experienced significant anxiety and reluctance to proceed with treatment ( 7 , 8 ). The extent to which cancer patients experienced the tension between potential exposure to COVID-19 and undergoing cancer treatment is not yet well understood.…”