Perceptions, expectations, and experiences of gynecological cancer patients: a pan-European ESGO-ENGAGe survey

What is it about?

This survey aimed to fill an important void in cross-national survey research as a collaborative effort of medical professionals with non-profit organizations, collecting data from 1436 gynecological cancer patients in ten European countries. We found that patients’ knowledge about screening programs varied by type of cancer: 56.5% for cervical smear test 42.5% for HPV/DNA based cervical cytology, 41.2% for HPV vaccine, 30.7% for BRCA test for ovarian carcinoma, and 6.3% for weight control for endometrial carcinoma. Wait time for treatment still had room for improvement in many countries, and overall, we found that 68% of the patients had to wait up to 1 month for their treatment to start; 19.2% of the patients waited 1-2 months, and 12.7% of the patients longer than 2 months. An important goal was to identify areas of unmet need, especially in the area of supportive care, so that patients orientated service and care provision can be better navigated and structured. The level of complimentary support offered to patients remained at low levels in most areas across all 10 countries. Most accessible support was psychological support for 52.8% patients, while other aspects of complimentary support such as social support (13.6%), dietician input (26.3%), sexual counseling (5.1%), access to a rehabilitation program (12.8%), early access to palliative care support (5.1%) remained at critically low levels. Also only 1/3 of patient stated having offered adequate access and information to patient organizations and support groups. This survey identified key areas of unmet need in the care of gynecological cancer patients, especially in regards to complimentary support, access to palliative care, information material, patient education and communication between medical personnel, patients and patients advocates. • ENGAGe is the first Pan-European group of patient advocacy groups in gynecological cancers. This survey was developed as an ESGO-ENGAGE as a first of its kind collaborative project between medical experts and non-profit gynecological cancer patient advocacy organizations to establish a baseline of unmet needs of gynecological cancer patients during their treatment journey. • Responses from 1436 patients across all types of gynecological cancer from 10 European countries identified aspects of care that require quality improvement and addressed key points towards a more effective cancer prevention and early detection and in Europe. • Significant deficiencies across many levels were identified, especially in regards to supportive care.

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