Cancer patients’ pathways: evidence and implications for policy

Makene, Fortunata Songora; Ngilangwa, Richard Gordon; Mackintosh, Maureen; Santos, Cristina; Cross, Charlotte; Mujinja, Phares G.M. and Ngoma, Twalib (2020). Cancer patients’ pathways: evidence and implications for policy. Economic and Social Research Foundation (ESRF), Innovation for Cancer Care in Africa (ICCA), The Open University.

URL: https://www.open.ac.uk/researchprojects/innovation...

Abstract

This Discussion Paper presents findings from a patients' pathways survey conducted in 2019 with 62 Tanzanian participants suffering from cancer or survivors of cancer. The paper looks at facilitators and barriers to accessing cancer care in Tanzania. A number of identified challenges that hinder patients from accessing care in a timely manner relate to costs, diagnosis and referrals. The paper highlights the social and economic burden faced by patients on the path to treatment. The research forms part of a larger collaborative project, Innovation for Cancer Care in Africa (ICCA).
The survey included an innovative methodology, tracing in detail patients’ pathways through their experience of cancer from first symptoms to diagnosis to treatment and after. Key findings in this paper include the following.
* Late-stage presentation of cancer is acknowledged to be a serious impediment to effective treatment in Tanzania. The average delay for these patients between first going to a health facility with symptoms that were those of cancer, to diagnosis, was 2.13years. This delay is a central cause of late stage presentation for treatment.
* In their search for a diagnosis, many patients have moved repeatedly between formal facilities as their (often severe) symptoms worsened. While most public sector patients had to move “up” the system, from district to zonal or national level hospitals to obtain a diagnosis, only 15% of all these movements between facilities were the result of a referral. Most were patients’ (and their families’) search for diagnosis.
* Regional hospitals, to which many patients moved from district level, did not do well in terms of diagnosis; only 8 people were eventually diagnosed at regional level including none who began their pathways at that level.
* Several patients had been well served by dispensaries and district hospitals: two directly diagnosed there, and several moving directly to the facility where diagnosed: there is thus some good practice at district level to be shared.
* Two patients were diagnosed through screening, both after several moves between formal health facilities, evidencing both the importance of screening and the lack of effective investigation of symptoms within the system.
* Out-of-pocket costs were high for patients in the period when they were seeking treatment, an average of over TZS 400,000. For those on lower household incomes in particular, this had imposed a major burden and source of impoverishment. This effect was worsened by the addition of transport costs of moving between facilities.
* Patients starting in the private sector, generally with NHIF or private insurance, experienced shorter and more direct trajectories to diagnosis. Insurance was only partially financially protective before diagnosis, reducing on average but not eliminating out of pocket (OOP) spending.
* Delays between diagnosis and treatment were much shorter: average 16 weeks to start of treatment. A cancer diagnosis triggered, on average, burdensome continuing costs: while half of respondents made no OOP payments after diagnosis, the average payments for all respondents were over TZS 1.6 million. Of those who made these payments, 80% had no insurance.
* Over half of respondents said they had used a complementary or alternative form of care. For many this was prayer and faith healing, sometime associated with other forms of mosque or church support. Those who went to alternative healers and gave cost details had spent an average of nearly TZS half a million.
* Free treatment at Ocean Road Cancer Institute (ORCI) is effective in protecting many lower income patients, who made up the majority of respondents interviewed at ORCI, from prohibitive costs of treatment, and is hugely appreciated by patients.

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