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.
<h4>Background</h4>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...
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Public Library of Science (PLoS)
2024-01-01
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| author | Frances Reid Tracey Adams Rafe Sadnan Adel Carlos E Andrade Anmol Bajwa Ian G Bambury Nada Benhima Raikhan Bolatbekova David Cantu-De Leon Phaedra Charlton Carlos Chávez Chirinos Robin Cohen Mary Eiken Erick Estuardo Estrada Dilyara Kaidarova Iren Lau Clara MacKay Precious Takondwa Makondi Asima Mukhopadhyay Aisha Mustapha Florencia Noll Martin Origa Jitendra Pariyar Shahana Pervin Ngoc T H Phan Basel Refky Afrin F Shaffi Eva-Maria Strömsholm Yin Ling Woo Sook-Yee Yoon Nargiza Zakirova Runcie C W Chidebe Garth Funston Isabelle Soerjomataram |
| author_facet | Frances Reid Tracey Adams Rafe Sadnan Adel Carlos E Andrade Anmol Bajwa Ian G Bambury Nada Benhima Raikhan Bolatbekova David Cantu-De Leon Phaedra Charlton Carlos Chávez Chirinos Robin Cohen Mary Eiken Erick Estuardo Estrada Dilyara Kaidarova Iren Lau Clara MacKay Precious Takondwa Makondi Asima Mukhopadhyay Aisha Mustapha Florencia Noll Martin Origa Jitendra Pariyar Shahana Pervin Ngoc T H Phan Basel Refky Afrin F Shaffi Eva-Maria Strömsholm Yin Ling Woo Sook-Yee Yoon Nargiza Zakirova Runcie C W Chidebe Garth Funston Isabelle Soerjomataram |
| author_sort | Frances Reid |
| collection | DOAJ |
| description | <h4>Background</h4>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.<h4>Methods</h4>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.<h4>Conclusion</h4>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. |
| format | Article |
| id | doaj-art-ebfb292d01ac415396c2655c8bf5cb32 |
| institution | OA Journals |
| issn | 1932-6203 |
| language | English |
| publishDate | 2024-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj-art-ebfb292d01ac415396c2655c8bf5cb322025-08-20T02:31:41ZengPublic Library of Science (PLoS)PLoS ONE1932-62032024-01-01195e029815410.1371/journal.pone.0298154The 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.Frances ReidTracey AdamsRafe Sadnan AdelCarlos E AndradeAnmol BajwaIan G BamburyNada BenhimaRaikhan BolatbekovaDavid Cantu-De LeonPhaedra CharltonCarlos Chávez ChirinosRobin CohenMary EikenErick Estuardo EstradaDilyara KaidarovaIren LauClara MacKayPrecious Takondwa MakondiAsima MukhopadhyayAisha MustaphaFlorencia NollMartin OrigaJitendra PariyarShahana PervinNgoc T H PhanBasel RefkyAfrin F ShaffiEva-Maria StrömsholmYin Ling WooSook-Yee YoonNargiza ZakirovaRuncie C W ChidebeGarth FunstonIsabelle Soerjomataram<h4>Background</h4>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.<h4>Methods</h4>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.<h4>Conclusion</h4>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.https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0298154&type=printable |
| spellingShingle | Frances Reid Tracey Adams Rafe Sadnan Adel Carlos E Andrade Anmol Bajwa Ian G Bambury Nada Benhima Raikhan Bolatbekova David Cantu-De Leon Phaedra Charlton Carlos Chávez Chirinos Robin Cohen Mary Eiken Erick Estuardo Estrada Dilyara Kaidarova Iren Lau Clara MacKay Precious Takondwa Makondi Asima Mukhopadhyay Aisha Mustapha Florencia Noll Martin Origa Jitendra Pariyar Shahana Pervin Ngoc T H Phan Basel Refky Afrin F Shaffi Eva-Maria Strömsholm Yin Ling Woo Sook-Yee Yoon Nargiza Zakirova Runcie C W Chidebe Garth Funston Isabelle Soerjomataram 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. PLoS ONE |
| title | 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. |
| title_full | 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. |
| title_fullStr | 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. |
| title_full_unstemmed | 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. |
| title_short | 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. |
| title_sort | 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 |
| url | https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0298154&type=printable |
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