Objectives To determine levels of awareness of ovarian cancer symptoms and to identify barriers to help-seeking and predictors of a longer time to help-seeking in a UK female population-based sample.Methods A UK population-based sample of women [n=1000, including a subsample of women at higher risk due to their age (≥45 years, n=510)] completed the Ovarian Cancer Awareness Measure by telephone interview. Questions measured symptom awareness (using recall and recognition), barriers to medical helpseeking and anticipated time to help-seeking. Regression analyses identified predictors of a higher score on a scale of anticipated time to help-seeking. Results Most women (58% overall sample; 54% subgroup) were unable to recall any symptoms but 99% recognised at least one. Recognition was lowest for difficulty eating and persistently feeling full. In the sample overall, higher socio-economic status and higher endorsement of practical and service barriers independently predicted a longer anticipated time to help-seeking for more symptoms. White ethnicity was an additional predictor in the older subgroup. Conclusions This study suggests awareness of ovarian cancer symptoms is low in the UK, and varies widely between symptoms. It identifies variables that may be involved in a longer time to help-seeking for possible ovarian cancer symptoms and highlights the need for more indepth research into the factors related to time to help-seeking in real-world situations.

IntroductionWith the global incidence of ovarian cancer set to rise by 55% to 371 000 per year by 2035, current 5-year survival rates below 50%, and 15% of women with ovarian cancer dying within 2 months of diagnosis, urgent action is required to improve survival and quality of life.ObjectiveTo deal with the evidence gap relating to the experience of women with the disease around the globe and identify opportunities to drive progress.MethodsThe study included a review of global trends in incidence, mortality, and survival (October 2017); qualitative interviews with women and clinicians in 16 countries (December 2017); and an online survey for women available in 15 different languages (open for 2 months, March to early May 2018). Women were eligible to participate if they had been diagnosed in the previous 5 years and were proficient in one of the 15 languages offered.ResultsA total of 1531 women from 44 countries took part in the analysis. On average, 69.1% of women were not aware of ovarian cancer before their own diagnosis, varying from 50.9% (Hungary) to 86.4% (Brazil). A total of 78.3% of symptomatic women sought medical help, varying from 62.8% (Japan) to 87.7% (UK). Fewer than half of the women visited a doctor within 1 month (46.3%) of experiencing symptoms, varying from 38.5% (USA) to 77.3% (Germany), and a quarter of women waited 3 months or more. On average, 43.2% of women were diagnosed within 1 month of visiting a doctor, ranging from 30% (UK) to 62.3% (Italy). The average estimated time from experiencing symptoms to diagnosis was 31 weeks, but this ranged from 21.3 (Germany) to 39.7 (Brazil). Rates of post-diagnosis genetic testing ranged from 5.0% (Japan) to 79.1% (USA). Clinicians indicated that access to specialist treatment in high-volume centers varies greatly by country and region.ConclusionThe findings of this study identify some of the major challenges and opportunities to improve the time to diagnosis and management of women with ovarian cancer. These problems vary widely by country, and reducing the variability is an important first step towards improving outcomes for women with ovarian cancer.

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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 ...

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