The every woman study™ low- and middle-income countries edition protocol: A multi-country observational study to assess opportunities and challenges to improving survival and quality of life for women with ovarian cancer

Reid F. Adams T. Adel R.S. Andrade C.E. Bajwa A. Bambury I.G. Benhima N. Bolatbekova R. Leon D.C.-D. Charlton P. Chirinos C.C. Cohen R. Eiken M. Estrada E.E. Kaidarova D. Lau I. MacKay C. Makondi P.T. Mukhopadhyay A. Mustapha A. Noll F. Origa M. Pariyar J. Pervin S. Phan N.T.H. Refky B. Shaffi A.F. Strömsholm E.-M. Woo Y.L. Yoon S.-Y. Zakirova N. Chidebe R.C.W. Funston G. Soerjomataram I.
May 2024 Public Library of Science

PLoS ONE
2024 #19 Issue 5 May

Background Ovarian cancer is a challenging disease to diagnose and treat effectively with five-year survival rates below 50%. Previous patient experience research in high-income countries highlighted common challenges and opportunities to improve survival and quality of life for women affected by ovarian cancer. However, no comparable data exist for low-and middle-income countries, where 70% of women with the disease live. This study aims to address this evidence gap. Methods This is an observational multi-country study set in low- and middle-income countries. We aim to recruit over 2000 women diagnosed with ovarian cancer across multiple hospitals in 24 countries in Asia, Africa and South America. Country sample sizes have been calculated (n = 70–96 participants /country), taking account of varying national five-year disease prevalence rates. Women within five years of their diagnosis, who are in contact with participating hospitals, are invited to take part in the study. A questionnaire has been adapted from a tool previously used in high-income countries. It comprises 57 multiple choice and two open-ended questions designed to collect information on demographics, women’s knowledge of ovarian cancer, route to diagnosis, access to treatments, surgery and genetic testing, support needs, the impact of the disease on women and their families, and their priorities for action. The questionnaire has been designed in English, translated into local languages and tested according to local ethics requirements. Questionnaires will be administered by a trained member of the clinical team. Conclusion This study will inform further research, advocacy, and action in low- and middle-income countries based on tailored approaches to the national, regional and global challenges and opportunities. In addition, participating countries can choose to repeat the study to track progress and the protocol can be adapted for other countries and other diseases.

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World Ovarian Cancer Coalition, Toronto, ON, Canada
Department of Obstetrics and Gynaecology, Groote Schuur Hospital, Cape Town, South Africa
South African Medical Research Centre Gynaecological Cancer Research Centre (SA MRC UCT GCRC), Cape Town, South Africa
CancerBD, Dhaka, Bangladesh
Department of Gynecologic Oncology, Barretos Cancer Hospital, Barretos, Brazil
University of the West Indies, Kingston, Jamaica
Department of Medical Oncology, Mohammed VI University Hospital, Marrakech, Morocco
Kazakh Institute of Oncology and Radiology, Almaty, Kazakhstan
Instituto Nacional de Cancerología, Ciudad de México, Mexico
Instituto Regional de Enfermedades Neoplásicas, Arequipa, Peru
Sandy Rollman Ovarian Cancer Foundation, Wynnewood, PA, United States
International Gynecologic Cancer Society, Chicago, IL, United States
Hospital General San Juan de Dios, Guatemala City, Guatemala
Ovarian Cancer Malaysia, Kuala Lumpur, Malaysia
National Cancer Center, Kamuzu Central Hospital, Kamuzu, Malawi
Kolkata Gynaecological Oncology Trials and Translational Research Group, Kolkata, India
Ahmadu Bello University Teaching Hospital, Kaduna State, Zaria, Nigeria
Sanatorio Allende, Cordoba, Argentina
Uganda Cancer Institute, Kampala, Uganda
Civil Service Hospital of Nepal, Kathmandu, Nepal
National Institute of Cancer Research & Hospital, Dhaka, Bangladesh
Danang Oncology Hospital, Danang, Viet Nam
Mansoura University Oncology Center, Mansoura, Egypt
Moi University, Moi Teaching and Referral Hospital, Eldoret, Kenya
Gynecological Cancer Patients in Finland, Helsinki, Finland
Department of Obstetrics and Gynaecology, University Malaya Medical Centre, Kuala Lumpur, Malaysia
Republican Specialized Scientific and Practical Medical Center of Oncology and Radiology of the Ministry of Health of the Republic of Uzbekistan, Tashkent, Uzbekistan
Project PINK BLUE, Abuja, Nigeria
Department of Sociology & Gerontology, Miami University, Oxford, OH, United States
Wolfson Institute of Population Health, Queen Mary University of London, London, United Kingdom
Cancer Surveillance Branch, International Agency for Research on Cancer, Lyon, France

World Ovarian Cancer Coalition
Department of Obstetrics and Gynaecology
South African Medical Research Centre Gynaecological Cancer Research Centre (SA MRC UCT GCRC)
CancerBD
Department of Gynecologic Oncology
University of the West Indies
Department of Medical Oncology
Kazakh Institute of Oncology and Radiology
Instituto Nacional de Cancerología
Instituto Regional de Enfermedades Neoplásicas
Sandy Rollman Ovarian Cancer Foundation
International Gynecologic Cancer Society
Hospital General San Juan de Dios
Ovarian Cancer Malaysia
National Cancer Center
Kolkata Gynaecological Oncology Trials and Translational Research Group
Ahmadu Bello University Teaching Hospital
Sanatorio Allende
Uganda Cancer Institute
Civil Service Hospital of Nepal
National Institute of Cancer Research & Hospital
Danang Oncology Hospital
Mansoura University Oncology Center
Moi University
Gynecological Cancer Patients in Finland
Department of Obstetrics and Gynaecology
Republican Specialized Scientific and Practical Medical Center of Oncology and Radiology of the Ministry of Health of the Republic of Uzbekistan
Project PINK BLUE
Department of Sociology & Gerontology
Wolfson Institute of Population Health
Cancer Surveillance Branch

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