November 2023 Update
The Every Woman Study™: Low- and Middle-Income Edition is a unique and ambitious project to define the challenges and opportunities to improve survival and quality of life for women diagnosed with ovarian cancer in resource limited settings. Working with the International Gynecologic Cancer Society, the study is being run through a selection of hospital clinics in participating countries. Women within five years of their diagnosis are invited to participate, either by interview, paper survey, or a secure online link to the survey which covers their knowledge of the disease, route to diagnosis, treatment, personal priorities, and their information, emotional and practical support needs.
We are entering a new phase for the study as data collection winds down in most countries, and we begin the process of working with Country Leads to clean the data, look through the initial country findings, and build our global data set. However, for some the race is on still to get final ethics approval, and women recruited. This is not for lack of trying by the local teams. We aim to finish data collection at the end of December 2023. From our initial target list of 31 countries, we have worked with 24, and have successfully launched the study in 21, with the possibility of one final participant.
With close to 2,000 surveys now entered onto our REDCap data capture system we are already beginning to see strong common themes emerging, as well as areas of difference between settings, be they by country, income status, or rural verses urban locations.
Countries are asked to collect a minimum sample size and a number already have:
- Argentina
- Bangladesh
- Brazil
- Kazakhstan
- Kenya
- Malaysia
- Mexico
- Nigeria
- India
- Uzbekistan
- Vietnam
For those countries reaching their minimum sample sizes by the end of data collection, they will have sufficient data to make some comments about ovarian cancer care in their country. When the global data set is combined, more will be revealed as differences between the countries will emerge. This is the important part of the study. We all know what the challenges are, but knowing where we should and could start to tackle those challenges will be made clearer by the findings in each location.
In our previous study, no one country had all the answers. Each country faced a unique blend of challenges, and aspects that were less problematical. This gives the potential for countries to learn from each other, especially those in similar settings to ultimately provide strategies, bespoke to each setting.
This is the starting point. Knowing data is one thing. What you do with it is where we begin to see the improvements that women so desperately need.
Thank you to each and every one of you who has contributed to the study either as a participant, a researcher, a country lead, or a member of our Oversight Committee. Thanks also to our strategic advocacy partner, the International Gynecologic Cancer Society who have worked on this with us, and share the financial cost of the study. We look forward to sharing more with you as the results come in.
Background
The World Ovarian Cancer Coalition’s 2018 online Every Woman StudyTM captured data from 1531 women with ovarian cancer in 44 countries. Results published in 2020 showed wide variations globally on key patient experience metrics, revealing many opportunities for improvement. However, a limitation of the Study was a lack of sufficient data from low- and middle-income countries.
GLOBOCAN projects that ovarian cancer incidence will rise almost 40% by 2040 with developing countries bearing the greatest burden. Furthermore, 70% of women diagnosed each year live in low- or middle-income countries, where overall data about the burden of the disease is insufficient to guide public-health priorities.
Working with our partner, the International Gynecologic Cancer Society, the objective of this new initiative is to document for the first time ever, on this scale, the experiences of women with ovarian cancer in up to 30 low- and middle-income countries from pre-diagnosis through post-treatment. Initial insights are expected in second half of 2023, with full reports and papers in 2024.
These pages will be updated as results, reports, and presentations are released.
Co-Chairs & Leadership
The Oversight Committee is led by Co-Chairs Dr. Tracey Sheridan Adams of Groote Schuur Hospital, Cape Town, South Africa and Robin Cohen, Vice-Chair of the Coalition and CEO of the Sandy Rollman Ovarian Cancer Foundation in the United States.
Frances Reid, Programme Director of the Coalition is serving as Study Lead and Coalition CEO Clara MacKay and IGCS CEO Mary Eiken lead the project team.