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NCI seminar: UCT researcher outlines AWACEN findings on barriers to early cancer diagnosis in Southern Africa
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Summary
Professor Jennifer Moodley presented AWACEN research showing high awareness of cancer names but large gaps in unprompted knowledge of risk factors and widespread barriers (financial, transport, stigma) that delay diagnosis; she urged locally validated tools, provider training and multi‑platform interventions.
Professor Jennifer Moodley, director of the Cancer Research Initiative at the University of Cape Town, told a U.S. National Cancer Institute Center for Global Health seminar that ‘‘timely diagnosis of people with symptoms is an important early diagnosis strategy’’ and outlined findings from the AWACEN (African Awareness of Cancer and Early Detection) program and related reviews.
Moodley said AWACEN developed and validated a locally adapted measurement tool (translated into local languages, including isiXhosa and Acholi) and used it in a community survey conducted Aug.–Dec. 2018 that visited nearly 2,000 households and interviewed 1,758 women across urban and rural sites in South Africa and Uganda. The survey found 91% of women had heard of breast cancer, but in an unprompted recall question only 9% could name at least one breast‑cancer risk factor; prompted recognition rose to 95% for at least one risk factor and 99% for at least one symptom. For cervical cancer, 89% had heard of the disease, unprompted recall of risk factors was 38%, and prompted recognition of at least one risk factor was 99%.
Moodley highlighted important gaps in specific risk‑factor knowledge: ‘‘Just under half of our participants did not recognise HIV infection increased your risk of cervical cancer,’’ she said, and about a quarter did not recognise HPV as a risk factor. She also described prevalent lay beliefs (for breast cancer, 21% spontaneously named undergarments as a risk and 88% endorsed the item when prompted) that can complicate public messaging.
Using qualitative interviews with symptomatic women (23 in Uganda, 18 in South Africa), Moodley described complex, iterative symptom appraisal, misattribution of symptoms, and stigma that sometimes leads women to avoid disclosure. She said intersecting barriers — transport, difficult terrain, physical safety concerns and financial cost — frequently delay help-seeking.
On the provider side, Moodley reported interviews with 51 primary‑care clinicians using clinical vignettes. She said providers’ history-taking and assessment were generally comprehensive, but clinicians identified clear needs for additional training, simpler referral systems and better feedback from higher tiers of care.
Moodley summarized intervention evidence from a systematic review and scoping review covering studies between 2010 and 2020: outcome measures and interval definitions varied widely, making comparisons difficult, but feasible intervention approaches fell into four broad groups — education and community awareness; provider knowledge and skills training; infrastructural and patient‑navigation supports (including decentralized services and one‑stop clinics); and technological tools for decision support and follow-up.
She said the AWACEN tool has been adapted by five other projects and the AWACEN network now includes 85 members across 22 countries. Moodley noted AWACEN received funding from the U.K. National Institute for Health Research to expand scope (to include men and colorectal cancer) and to work across provinces in South Africa and in Harare and Bulawayo, Zimbabwe, with Queen Mary University of London among the partners.
On implementation, Moodley emphasized community engagement and practical measures used during fieldwork: community advisory boards to negotiate access, local fieldworkers familiar with terrain, and local security arrangements where necessary to keep teams safe. She also cautioned that digital tools alone are insufficient in many sites because of unreliable electricity, intermittent Internet and the data and battery costs for community users.
The presentation concluded with an emphasis on locally validated measurement, multi‑stakeholder engagement, provider support and interventions that combine educational, infrastructural and technological elements to speed diagnosis and reduce financial and access barriers. The seminar recording and tools are available from cancer.gov/globalhealth, Moodley said.
