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Original research
The World Ovarian Cancer Coalition Every Woman Study: identifying challenges and opportunities to improve survival and quality of life
  1. Frances Reid1,
  2. Neerja Bhatla2,
  3. Amit M Oza3,
  4. Stephanie V Blank4,
  5. Robin Cohen5,
  6. Tracey Adams6,
  7. Amanda Benites7,
  8. Diane Gardiner8,
  9. Sylvia Gregory9,
  10. Makiko Suzuki10 and
  11. Annwen Jones11
  1. 1 Every Woman Study, World Ovarian Cancer Coalition, Toronto, Ontario, Canada
  2. 2 Department of Obstetrics and Gynaecology, All India Institute of Medical Sciences, New Delhi, India
  3. 3 Department of Medical Oncology and Hematology, Princess Margaret Hospital, Toronto, Ontario, Canada
  4. 4 Icahn School of Medicine at Mount Sinai, New York, New York, USA
  5. 5 Sandy Rollman Ovarian Cancer Foundation, Philadelphia, Pennsylvania, USA
  6. 6 Groote Schuur Hospital, Cape Town, South Africa
  7. 7 Patient representative, Sao Paolo, Brazil
  8. 8 Patient representative, Melbourne, Victoria, Australia
  9. 9 Patient representative, Milan, Italy
  10. 10 Patient representative, Kyoto, Japan
  11. 11 Target Ovarian Cancer, London, UK
  1. Correspondence to Ms Frances Reid, Every Woman Study, World Ovarian Cancer Coalition, Toronto, Canada; frances{at}worldovariancancercoalition.org

Abstract

Introduction With 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.

Objective To deal with the evidence gap relating to the experience of women with the disease around the globe and identify opportunities to drive progress.

Methods The 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.

Results A 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.

Conclusion The 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.

  • ovarian cancer
  • ovary
  • quality of life (pro)/palliative care

https://doi.org/10.1136/ijgc-2019-000983

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    Footnotes

    • Twitter @Frances39329305

    • Funding The study was funded by the World Ovarian Cancer Coalition, with no direct grants received towards the work. Some pro-bono translation support was received from Tesaro, Roche and Merck Pfizer Alliance, but they had no input into the content of the study.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data may be available from the World Ovarian Cancer Coalition, subject to approval.