The world ovarian cancer coalition every woman study: Identifying challenges and opportunities to improve survival and quality of life

The prognosis for ovarian cancer remains poor even in highly developed countries such as the United States, with approximately 1 in 6 women dying within 3 months of diagnosis and 1 in 2 dying within 5 years. Given that the global incidence of ovarian cancer is set to rise 55% by 2035, urgent action is required to improve survival and quality of life in this patient population. The World Ovarian Cancer Coalition (the coalition) is a not-for-profit organization comprising 135 patient advocacy group members in 37 countries. This multifaceted study commissioned by the coalition aimed to address the evidence gap relating to the experience of women with ovarian cancer globally and to identify priorities to improve survival and quality of life for these patients worldwide. This study included a review of global incidence, mortality and survival statistics and trends, qualitative interviews with women and clinicians in 16 countries, and an online survey for women with ovarian cancer to better identify priorities for care. The survey was dispersed primarily through email and social media with recruitment managed by coalition board members, member organizations, some clinical groups, and other organizations. Participants were eligible for the survey if they had been diagnosed with ovarian cancer in the previous 5 years. The final entry pool for analysis consisted of 1531 responses from women in 44 countries. A total of 69.1% of women either had not heard of ovarian cancer or knew nothing about it prior to their diagnosis. Eighty percent of women, with significant variation by country, who experienced symptoms consulted a doctor at some point, and those who pay for some or all of their own care were least likely to seek help from a doctor of any type (72.2% vs 81.6%; P = 0.048, z = 1.98). A total of 53.1% of participants reported not getting all the information about the condition that they needed at time of diagnosis, and 14.3% of participants reported the doctor who delivered the diagnosis spending less than 5 minutes with them during this encounter. Following diagnosis, more than half of all women underwent genetic testing, varying from 5% in Japan to 79.1% in the United States. Despite published evidence on the benefit of assessment, surgery, and treatment by ovarian cancer specialists in high-volume centers, there was wide variation in rates of specialist care even between countries with highly established national systems. Clinicians in Germany estimated that only 50% to 60% of women received this care versus UK clinicians, who estimated the figure at 90%. The majority (94%) of participants had either primary or interval debulking surgery, with no variation for age or stage; however, in Hungary, only 59% of women had surgery. Only 23.7% of all participants were asked about joining a clinical trial, yet more than 95% of women indicated interest in future clinical trials. More than one-third of participants (34.6%) reported anxiety, 25% reported depression, and approximately 25% reported sleep loss, yet only 28% of women had been offered support by a health care professional for their mental health. This study highlights some of the challenges for improving the early diagnosis and management of women with ovarian cancer. Particularly notable are the variation in treatment and diagnosis metrics that occur between countries, as these may be used in future initiatives to improve outcomes for women.