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.

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.

Redefining Cancer Research Priorities in Low- and Middle-Income Countries in the Post-COVID-19 Global Context: A Modified Delphi Consensus Process.

PURPOSE: The post-COVID-19 funding landscape for cancer research globally has become increasingly challenging, particularly in resource-challenged regions (RCRs) lacking strong research ecosystems. We aimed to produce a list of priority areas for cancer research in countries with limited resources, informed by researchers and patients. METHODS: Cancer experts in lower-resource health care systems (as defined by the World Bank as low- and middle-income countries; N = 151) were contacted to participate in a modified consensus-seeking Delphi survey, comprising two rounds. In round 1, participants (n = 69) rated predetermined areas of potential research priority (ARPs) for importance and suggested missing ARPs. In round 2, the same participants (n = 49) rated an integrated list of predetermined and suggested ARPs from round 1, then undertook a forced choice priority ranking exercise. Composite voting scores (T-scores) were used to rank the ARPs. Importance ratings were summarized descriptively. Findings were discussed with international patient advocacy organization representatives. RESULTS: The top ARP was research into strategies adapting guidelines or treatment strategies in line with available resources (particularly systemic therapy) (T = 83). Others included cancer registries (T = 62); prevention (T = 52); end-of-life care (T = 53); and value-based and affordable care (T = 51). The top COVID-19/cancer ARP was strategies to incorporate what has been learned during the pandemic that can be maintained posteriorly (T = 36). Others included treatment schedule interruption (T = 24); cost-effective reduction of COVID-19 morbidity/mortality (T = 19); and pandemic preparedness (T = 18). CONCLUSION: Areas of strategic priority favored by cancer researchers in RCRs are related to adaptive treatment guidelines; sustainable implementation of cancer registries; prevention strategies; value-based and affordable cancer care; investments in research capacity building; epidemiologic work on local risk factors for cancer; and combatting inequities of prevention and care access.