DOI: 10.6084/m9.figshare.26936153
title: Diagnosis, treatment and burden in advanced ovarian cancer: a UK real-world survey of healthcare professionals and patients

description: <b>Aim:</b> Little is known regarding uptake of epithelial ovarian cancer (EOC) treatments or patient burden in UK real-world practice. <b>Methods:</b> Cross-sectional surveys of patients with advanced EOC and healthcare professionals (HCPs). <b>Results:</b> 101 HCPs and 142 patients participated. Time from initial primary care consultation to diagnosis was ∼7 weeks. 83% patients were offered hereditary genetic testing, with 89% uptake. 53% HCPs reported surgery was performed ≤1 month in non-neoadjuvant setting. Surgery delay negatively impacted patient quality of life (61%), mental health (89%), and surgical outcomes (63%). 56% patients received active first-line maintenance treatment; patients on active surveillance had greater emotional/psychological distress. <b>Conclusion:</b> Treatment delays and low uptake of active first-line treatment should be addressed. Emotional support must be readily accessible throughout treatment. New treatments for ovarian cancer mean that patients could be treated and live with the disease for many years. However, not much is known about the treatments that are actually received by patients with ovarian cancer in real-life. These surveys were done to learn more about the treatment and experience of patients with ovarian cancer in the UK. 101 healthcare professionals (HCPs) and 142 patients took the surveys. The surveys found that patients usually waited about 7 weeks from their first GP visit to diagnosis of ovarian cancer. Half of HCPs reported that patients had surgery within 1 month of the decision that surgery was needed. HCPs reported that delays in surgery had a negative impact on patient quality of life, mental health, and the success of the surgery. After finishing their first line of chemotherapy, about half of patients had a maintenance treatment to control their ovarian cancer and give them as long as possible between recurrences. The remaining patients were not given treatment but were watched for further signs of cancer. Patients on maintenance treatment experienced less emotional/psychological distress than those managed by watchful waiting. This survey shows that more needs to be done to make sure that patients with ovarian cancer in the UK are diagnosed and treated quickly and offered the right treatment. Emotional support should be available to patients during their treatment. Little is known about the uptake of treatments for epithelial ovarian cancer (EOC) in UK real-world practice or the corresponding burden on patients and healthcare systems. This non-interventional, cross-sectional survey of 142 patients with advanced EOC and 101 healthcare professionals (HCPs) was undertaken to characterise the patient journey and quality of life (QoL) impact of EOC from the perspective of both the patient and the HCP. Patient-reported time from initial primary care consultation to diagnosis was ∼7 weeks, which was dissatisfactory to 17% patients. Around four in five patients were offered hereditary (germline) genetic testing (mainly BRCA1/2), with high uptake of the offer (around three in four patients). 53% HCPs reported that surgery takes place within 1 month of the decision in non-neoadjuvant patients (92% in total within 2 months). A large proportion of HCPs noted that delays in surgery also have a considerable impact on patients' QoL (61% of HCPs), mental health (89%) and also impact surgical outcomes detrimentally (63%). Only 56% of patients reported receiving an active first-line maintenance treatment, with the remainder on active surveillance only; a greater proportion of patients on active surveillance experienced high levels of emotional/psychological distress compared with patients on active first-line maintenance treatment. HCPs reported that performance status, side effects and the patient's own preference were the main reasons why active surveillance was chosen over an active first-line maintenance therapy. Treatment delays and low uptake of active first-line treatment should be addressed among patients with EOC in the UK. Emotional support must be readily accessible throughout treatment.