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

Fortunata Songora Makene, Richard Ngilangwa, Cristina Santos, Charlotte Cross, Twalib Ngoma, Phares G.M. Mujinja, Marc Wuyts, Maureen Mackintosh*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

15 Citations (Scopus)
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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.

Original languageEnglish
Article number189
JournalBMC Health Services Research
Volume22
Issue number1
DOIs
Publication statusPublished - 12 Feb 2022

Bibliographical note

Funding Information:
This research forms part of a study entitled Innovation for Cancer Care in Africa (ICCA). Financial support is gratefully acknowledged from the Economic and Social Research Council (ESRC) UK, under the Global Challenges Research Fund, Inclusive Societies Initiative (reference ES/S000659/1). The content of this publication is the sole responsibility of the authors and does not necessarily reflect the views of the UK ESRC. The research team thank all the individuals and organizations who generously shared their time, experience, and materials for the purposes of this study including providers, patients, caregivers, and regulatory authorities. The research team is particularly grateful for the time and commitment of the cancer sufferers, many responding despite serious illness. The commitment and sensitivity of our interviewers Samwel Ebenezeri, Teddy Rucho, Nicholas Lusingu, Ikunda Njau, Rehema Paul, Wilfred Massau, Janeth Telekako, and Habambi Habambi is appreciated. Thanks also to participants in a workshop held in December 2019 in Dar es Salaam.

Publisher Copyright:
© 2022, The Author(s).

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