Patients’ pathways to cancer care in Tanzania: documenting and addressing social inequalities in reaching a cancer diagnosis

Abstract

Background This article investigates the extent and sources of late diagnosis of cancer in Tanzania, demonstrating how delayed diagnosis was patterned by inequities rooted in patients’ socio-economic background and by health system responses. It provides evidence to guide equity-focused policies to accelerate cancer diagnosis. Methods Tanzanian cancer patients (62) were interviewed in 2019. Using a structured questionnaire, respondents were encouraged to recount their pathways from first symptoms to diagnosis, treatment, and in some cases check-ups as survivors. Patients described their recalled sequence of events and actions, including dates, experiences and expenditures at each event. Socio-demographic data were also collected, alongside patients’ perspectives on their experience. Analysis employed descriptive statistics and qualitative thematic analysis. Results Median delay, between first symptoms that were later identified as indicating cancer and a cancer diagnosis, was almost 1 year (358 days). Delays were strongly patterned by socio-economic disadvantage: those with low education, low income and non-professional occupations experienced longer delays before diagnosis. Health system experiences contributed to these socially inequitable delays. Many patients had moved around the health system extensively, mainly through self-referral as symptoms worsened. This “churning” required out-of-pocket payments that imposed a severely regressive burden on these largely low-income patients. Causes of delay identified in patients’ narratives included slow recognition of symptoms by facilities, delays in diagnostic testing, delays while raising funds, and recourse to traditional healing often in response to health system barriers. Patients with higher incomes and holding health insurance that facilitated access to the private sector had moved more rapidly to diagnosis at lower out-of-pocket cost. Conclusions Late diagnosis is a root cause, in Tanzania as in many low- and middle-income countries, of cancer treatment starting at advanced stages, undermining treatment efficacy and survival rates. While Tanzania’s policy of free public sector cancer treatment has made it accessible to patients on low incomes and without insurance, reaching a diagnosis is shown to have been for these respondents slower and more expensive the greater their socio-economic disadvantage. Policy implications are drawn for moving towards greater social justice in access to cancer care.

Impact of COVID-19 on delivery of oncology services in Northern Tanzania: a cross-sectional study of community health workers and patients undergoing cancer treatment at the Kilimanjaro Christian Medical Centre

“…Lower education levels have been found previously to be associated with delay in diagnostic delay for patients with cancer in Tanzania. 33 One possible explanation for the lack of correlation between educational attainment and missing appointments could be that patients with a higher educational attainment were more likely to have a source of income that would be negatively affected by the pandemic (such as in tourism) than those with lower educational attainment (ie, subsistence farmers) and so this would balance out the baseline discrepancy, which was found in.…”

Experience and Perception of Patients and Healthcare Professionals on Acute Leukemia in Rwanda: A Qualitative Study

“…Similar barriers have been observed in other settings and other types of diseases. 14 , 18 , 27 The fear of a severe diagnosis, or of being stigmatized by the community because of an incurable disease, was also mentioned as an important barrier to seeking healthcare. These findings show that it is important to raise awareness within the population regarding acute leukemia, including the value of early diagnosis and that these diseases may be successfully treated.…”

“…The need to increase cancer education within the population was also recently highlighted in Tanzania. 27 , 28 Moreover, traditional healers also need to be aware of acute leukemia and other cancers, in order to promptly send patients with symptoms of these diseases to health facilities.…”

“…10 , 12 , 13 , 17 For many patients, costs are unaffordable, and it was proposed that after diagnosis of cancer, cancer treatment should be free for patients in Rwanda, as it is already done in Tanzania since 1993. 27 , 28 In accordance, as soon as a patient is confirmed to have cancer, costs related to treatment, other investigations, patient’s feeding, and hospitalization would be covered by the government. 27 Rwanda has demonstrated the possibility of implementing a free healthcare policy for patients diagnosed with certain diseases.…”

“… 27 , 28 In accordance, as soon as a patient is confirmed to have cancer, costs related to treatment, other investigations, patient’s feeding, and hospitalization would be covered by the government. 27 Rwanda has demonstrated the possibility of implementing a free healthcare policy for patients diagnosed with certain diseases. The policy of free healthcare has to a large extent been implemented in Rwanda for patients diagnosed with certain types of diseases such as tuberculosis and human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS).…”