World Ovarian Cancer Coalition, Toronto, Ontario, Canada.
Department of Obstetrics and Gynaecology, Groote Schuur Hospital, Cape Town, South Africa.
PLoS One. 2024 May 29;19(5):e0298154. doi: 10.1371/journal.pone.0298154. eCollection 2024.
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.
卵巢癌是一种难以诊断和有效治疗的疾病，其五年生存率低于 50%。先前在高收入国家进行的患者体验研究强调了改善受卵巢癌影响的女性生存和生活质量的常见挑战和机会。然而，在疾病患者 70%生活的中低收入国家，没有可比的数据。本研究旨在填补这一证据空白。
这是一项在中低收入国家进行的多国家观察性研究。我们旨在在亚洲、非洲和南美洲的 24 个国家的多家医院招募超过 2000 名被诊断患有卵巢癌的女性。考虑到不同国家五年疾病流行率的差异，计算了各国的样本量（每个国家/地区有 70-96 名参与者）。在诊断后五年内、与参与医院有联系的女性被邀请参加研究。调查问卷改编自高收入国家以前使用的工具。它由 57 个多项选择题和两个开放式问题组成，旨在收集有关人口统计学、女性对卵巢癌的认识、诊断途径、治疗方法、手术和基因检测、支持需求、疾病对女性及其家庭的影响，以及他们的行动重点等信息。问卷已用英文设计，翻译成当地语言，并根据当地伦理要求进行了测试。问卷将由临床团队的一名经过培训的成员管理。
本研究将根据国家、区域和全球挑战和机遇的量身定制方法，为中低收入国家的进一步研究、宣传和行动提供信息。此外，参与国家可以选择重复这项研究，以跟踪进展，并且可以为其他国家和其他疾病改编方案。
