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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 1 , Adams T 2 , Adel RS 1 , Andrade CE 3 , Bajwa A 1 , Bambury IG 4 Show all authors , Benhima N 5 , Bolatbekova R 6 , Leon DC 7 , Charlton P 1 , Chirinos CC 8 , Cohen R 1 , Eiken M 9 , Estrada EE 10 , Kaidarova D 6 , Lau I 11 , MacKay C 1 , Makondi PT 12 , Mukhopadhyay A 13 , Mustapha A 14 , Noll F 15 , Origa M 16 , Pariyar J 17 , Pervin S 18 , Phan NTH 19 , Refky B 20 , Shaffi AF 21 , Strömsholm EM 22 , Woo YL 23 , Yoon SY 23 , Zakirova N 24 , Chidebe RCW 1 , Funston G 25 , Soerjomataram I 26

Affiliations 

  • 1 World Ovarian Cancer Coalition, Toronto, Ontario, Canada
  • 2 Department of Obstetrics and Gynaecology, Groote Schuur Hospital, Cape Town, South Africa
  • 3 Department of Gynecologic Oncology, Barretos Cancer Hospital, Barretos, Brazil
  • 4 University of the West Indies, Kingston, Jamaica
  • 5 Department of Medical Oncology, Mohammed VI University Hospital, Marrakech, Morocco
  • 6 Kazakh Institute of Oncology and Radiology, Almaty, Kazakhstan
  • 7 Instituto Nacional de Cancerología, Ciudad de México, México
  • 8 Instituto Regional de Enfermedades Neoplásicas, Arequipa, Perú
  • 9 International Gynecologic Cancer Society, Chicago, Illinois, United States of America
  • 10 Hospital General San Juan de Dios, Guatemala City, Guatemala
  • 11 Ovarian Cancer Malaysia, Kuala Lumpur, Malaysia
  • 12 National Cancer Center, Kamuzu Central Hospital, Kamuzu, Malawi
  • 13 Kolkata Gynaecological Oncology Trials and Translational Research Group, Kolkata, India
  • 14 Ahmadu Bello University Teaching Hospital, Zaria, Kaduna State, Nigeria
  • 15 Sanatorio Allende, Cordoba, Argentina
  • 16 Uganda Cancer Institute, Kampala, Uganda
  • 17 Civil Service Hospital of Nepal, Kathmandu, Nepal
  • 18 National Institute of Cancer Research & Hospital, Dhaka, Bangladesh
  • 19 Danang Oncology Hospital, Danang, Vietnam
  • 20 Mansoura University Oncology Center, Mansoura, Egypt
  • 21 Moi University/Moi Teaching and Referral Hospital, Eldoret, Kenya
  • 22 Gynecological Cancer Patients in Finland, Helsinki, Finland
  • 23 Department of Obstetrics and Gynaecology, University Malaya Medical Centre, Kuala Lumpur, Malaysia
  • 24 Republican Specialized Scientific and Practical Medical Center of Oncology and Radiology of the Ministry of Health of the Republic of Uzbekistan, Tashkent, Uzbekistan
  • 25 Wolfson Institute of Population Health, Queen Mary University of London, London, United Kingdom
  • 26 Cancer Surveillance Branch, International Agency for Research on Cancer, Lyon, France
PLoS One, 2024;19(5):e0298154.
PMID: 38809901 DOI: 10.1371/journal.pone.0298154

Abstract

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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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