Beyond “Late Presentation”: Explaining Delayed Cancer Diagnosis in East Africa

Cross, Charlotte; Mokua, Sharon; Ngilangwa, Richard; Santos, Cristina; Ngoma, Twalib and Mujinja, Phares G. M. (2024). Beyond “Late Presentation”: Explaining Delayed Cancer Diagnosis in East Africa. In: Banda, Geoffrey; Mackintosh, Maureen; Njeru, Mercy Karimi; Makene, Fortunata Songora and Srinivas, Smita eds. Cancer Care in Pandemic Times: Building inclusive local health security in Africa and India. International Political Economy Series.. Switzerland: Palgrave Macmillan, pp. 93–111.



[Diagnosis] is like the basis of everything. If I am diagnosed early, I have a chance to survive. (Survivor, Kenya)

In Tanzania and Kenya, as in many other low- and middle-income countries (LMICs), the majority of cancer patients are diagnosed when their cancer is at a late stage, with negative implications for treatment options and efficacy, the cost of care, and rates of survival (Lehmann et al., 2020; Makau-Barasa et al., 2018; Mlange et al., 2016; Ngoma et al., 2015).

Reducing delays to diagnosis, and increasing the number of patients diagnosed, is a policy priority in both countries (Ministry of Health, 2017; Ministry of Health and Social Services, 2013) and internationally (WHO, 2020). Enabling earlier diagnosis is critical not only for patient outcomes but also for its potential to reduce the cost of care for patients and healthcare providers (Espina et al., 2017, Moodley et al., 2018). However, research regarding factors influencing the timeliness of diagnosis of cancers in LMICs remains limited (Nnaji et al., 2022).

Delayed diagnosis is often framed as a challenge of “late presentation” by patients at health facilities, to be explained by patient behaviour and characteristics, and prompting calls for public education about cancer symptoms and treatment and the importance of prompt facility attendance (Kassaman et al., 2022; Mlange et al., 2016, Mwaka et al., 2021).

Indeed, interventions aimed at addressing barriers to timely diagnosis in LMICs tend to emphasise improving patient, community, and to a lesser extent health provider knowledge, rather than addressing structural issues such as the financial costs associated with care (Qu et al., 2020).

It is certainly the case, as explored in Chapter 3, that limited knowledge and understanding of cancer and cancer treatment among patients, caregivers, and their communities contribute to fear and experiences of stigma, influencing whether and how patients seek care. However, this chapter builds on Chapter 4’s demonstration, from the accounts of patients, caregivers, and survivors, of the limitations of “late presentation” in explaining delays to diagnosis. We shift here to a more “professional” health system perspective, drawing largely on interviews with health professionals and policymakers in Kenya and Tanzania. These interviews identified key challenges, including access to screening, weak referral systems, the very limited availability of diagnostic pathology, and the direct and indirect costs of obtaining a cancer diagnosis, to which feasible responses could speed diagnosis. We argue that policy aimed at increasing early diagnosis must go well beyond improving population knowledge to address wider health system issues such as referral procedures, availability and accessibility of diagnostic tests, and the affordability of care.

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