Perceptions, expectations, and experiences of gynecological cancer patients: a pan-European ESGO-ENGAGe survey
Abstract
Gynecological cancers account for a significant amount of all cancers among women. In 2018, cervical-, uterine-, and ovarian- cancers accounted for 13.7% of all cancers among women worldwide,1 and it is estimated that each year gynecological cancers cause half a million deaths worldwide by an incidence of over a million new cases,2 despite the fact that a significant proportion of gynecological cancers may be preventable.3 Gynecological cancers have a significant impact on the reproductive and sexual health of affected patients.4 5 During the treatment journey, not just medical care, but also adequate supportive care including good communication with healthcare professionals,6 networking with other patients and having access to valuable information in printed and video materials,7 and support by patient advocacy groups,8 all have been shown to contribute in reducing the levels of stress and anxiety experienced by patients.
In an effort to capture the overall perception and needs of gynecological cancer patients, ESGO-Engage carried out a cross-national survey in 10 European countries. Established in 2012 by ESGO- (The European Society of Gynecological Oncology) ENGAGe (Network of Gynecological Cancer Advocacy Groups) is a network of European patient advocacy groups representing all gynecological cancers.
The main goal of the research was to establish a baseline of unmet needs, attitudes, and behavioral patterns of gynecological cancer patients during treatment, identify areas of improvement relating to patient-doctor communication aspects but also the overall quality of care, so that we can help better navigate treatment pathways and advocate for patients' needs and access to a more holistic approach in Europe, especially in the area of supportive care: an approach that goes beyond medical care, with elements of psychological and social needs, sexual counseling, access to broad information and resources, including patient support and advocacy organizations, and improving of communication with healthcare professionals. Among firsts in its class in scope and outreach in a wide range of countries in Europe, it aimed to provide an overview of not one specific but all gynecological cancers with an emphasis on patients' perceptions of quality of care and expectations.