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

• Published in: PloS one Vol. 19; no. 5; p. e0298154
• Main Authors: Reid, Frances, Adams, Tracey, Adel, Rafe Sadnan, Andrade, Carlos E, Bajwa, Anmol, Bambury, Ian G, Benhima, Nada, Bolatbekova, Raikhan, Leon, David Cantu-De, Charlton, Phaedra, Chirinos, Carlos Chávez, Cohen, Robin, Eiken, Mary, Estrada, Erick Estuardo, Kaidarova, Dilyara, Lau, Iren, MacKay, Clara, Makondi, Precious Takondwa, Mukhopadhyay, Asima, Mustapha, Aisha, Noll, Florencia, Origa, Martin, Pariyar, Jitendra, Pervin, Shahana, Phan, Ngoc T H, Refky, Basel, Shaffi, Afrin F, Strömsholm, Eva-Maria, Woo, Yin Ling, Yoon, Sook-Yee, Zakirova, Nargiza, Chidebe, Runcie C W, Funston, Garth, Soerjomataram, Isabelle
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 29-05-2024; Public Library of Science (PLoS)
• Subjects: Adult; Africa - epidemiology; Asia - epidemiology; Cancer; Cancer patients; Care and treatment; Data collection; Demographics; Developing Countries; Diagnosis; Earth Sciences; Ethics; Family medical history; Female; Genetic screening; Genetic testing; High income; Hospitals; Humans; Income; Industrialized nations; Low income groups; Medical diagnosis; Medicine and Health Sciences; Middle Aged; Mortality; Observational studies; Oncology, Experimental; Ovarian cancer; Ovarian Neoplasms - diagnosis; Ovarian Neoplasms - mortality; Ovarian Neoplasms - therapy; Patient outcomes; Quality of Life; Questionnaires; Research and Analysis Methods; Social Sciences; South America - epidemiology; Study Protocol; Surveys and Questionnaires; Survival; Survival Rate; Women; Womens health; South America; Asia; Africa
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0298154

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.
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.
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.