Creating a national cancer registry network - the Tanzania experience

Abstract
The Ministry of Health, Community Development, Gender, Elderly and Children (MoHCDGEC) has established 5 population-based cancer registries across the country. This helps the Ministry in a systematic and continuous process of registering every case of cancer diagnosed over a given period in a well-defined geographical region.

The goal of establishing these cancer registries is to strengthen national PBCR leadership and infrastructure, provide site-specific support for improving registry functioning, analysis, and collection of information across Tanzania through effective cancer registration and surveillance. The Ministry also aims at monitoring and evaluating cancer registry services at all health care system levels in the country.

A number of achievements have been witnessed in the country through collaboration with partners, these include; training 28 staff on cancer registration from 5 population-based cancer registries, included some indicators with cancer registration data in the “2019 & 2020 Annual Health Sector Performance Profile, developed Cancer Registry Strategic Plan (2019-2022), developed the costing tool and costing manual, and the results from four registries allowed a more accurate picture of the cancer profile in Tanzania.
For further improving and strengthening of Cancer registration in the future, the Ministry of Health has planned to establish the central coordination office, create a central database for CanReg and embed it into DHIS2 as well as disseminating Cancer registration data through including its statistics in the national health reports.

Apart from all the mentioned achievements the Ministry is still facing a few challenges like the unsustainable financial resources, using temporally registrars in some of the registries, and the CanReg database is still not integrated with other systems like DHIS2, CRVS as well as the GoTHOMIS systems which are the most recommended government systems to be used for data collection in the country.

Research on childhood cancer in Sub-Saharan Africa has shown a strikingly high proportion of patients lacking or eventually abandoning treatment. We aimed to provide a comprehensive overview of reasons attributing to low uptake of care for children affected by cancer in the region. Our questionnaire study covers random samples of 20 to 50 patients aged 0-19 years diagnosed with any cancer in 2018 and 2019 from nine population‐based cancer registries in nine countries. Main caretakers of patients are being interviewed and data on socio-demographics, patient and caretaker history prior to diagnosis, modality-specific barriers to chemotherapy, radiotherapy and surgery, and socio-cultural support are being collected. Preliminary results from caretakers in Libreville, Gabon, and Addis Ababa, Ethiopia show that a) fear of complications, poor health status of patients and feeling of misinformation, b) unavailability of radiotherapy devices and c) cost of both transport and therapy are leading barriers for cancer treatment. Our data may provide a baseline for meaningful interventions to improve access to cancer care among children in Sub-Saharan Africa.

Background: Population-level cancer survival is a measure of the overall efficacy of the cancer care system. However, there is very sparse data on population-level cancer survival from low-and-middle-income countries (LMIC). To fill this gap, the International Agency for Research on Cancer launched the Cancer Survival in Countries in Transition studies - SurvCan. The last SurvCan-2 study published in 2011, included data from three sub-Saharan African (SSA) countries. As part of the SurvCan-3 project, an update on cancer survival in SSA is presented using data from 13 member registries of the African Cancer Registry Network.

Methods: We included patients diagnosed from 2005-2014 from the population-based cancer registries (PBCR) of Benin-Cotonou, Cote d’Ivoire-Abidjan, Ethiopia-Addis Ababa, Kenya-Eldoret, Kenya-Nairobi, Mali-Bamako, Mauritius, Namibia, Seychelles, South Africa-Eastern Cape, Uganda-Kampala, Zimbabwe-Bulawayo, and Zimbabwe-Harare. Mostly active methods were used for patient follow-up. Patients were followed till the 31st of December 2014. We estimated the overall and relative survival at 1, 3, and 5 years after diagnosis by registry, and for the most common cancers.

Results: Survival data from 10,920 patients were analysed. The overall and relative survival estimates will be presented for cancers of the breast, cervix, prostate, oesophagus, colorectum, non-Hodgkin lymphoma (NHL), stomach, liver, ovary, bladder, thyroid, leukaemias, and for tracheal, lung, and bronchial carcinomas. Across SSA, cancer survival differed by tumour type, stage at diagnosis, and by country-HDI, a proxy for access to care.

Conclusion: Monitoring cancer survival in LMIC is necessary to understand reasons for cancer survival disparities worldwide. PBCRs are essential for accurately measuring the population-level cancer survival burden and must be supported in this role. Improved awareness, early diagnosis, and access to cancer care are essential for improving survival outcomes in SSA.

In Africa, population-level data on childhood cancers is sparse and incomplete, particularly information on staging and coding. Where population-based cancer registries (PBCRs) exist, they mainly focus on adult cancers. To address this issue, the Childhood Cancer Surveillance project aimed to establish national childhood cancer programme within five Southern African countries (Eswatini, Mozambique, South Africa (SA), Zambia and Zimbabwe).

All participating centres have functioning PBCRs with either national (SA, Eswatini and Zimbabwe) or regional (Mozambique and Zambia) coverage. Registrars were trained on the specifics of childhood cancer registration which included using the Tier 1 Toronto Childhood Cancer staging guidelines stage and to improve the accuracy of coding. All childhood cancers for the years 2018-2019 were retrospectively captured, staged, and information on treatment and vital status at end of 31 December 2021 were recorded where possible.

Cancer cases recorded ranged from 150 in Eswatini to over 800 in Mozambique and SA. The most common cancers varied by country; retinoblastoma in Zambia (17%), leukaemias in Eswatini (13%) and SA (21%), Wilms tumour in Zimbabwe (16%) and Burkitts lymphoma in Mozambique (11%). Staging was assigned for <10% of cases captured before the training. After the training, staging improved to ≈45-50% across the region. Treatment and outcome information was rarely recorded before the project started.

National childhood cancer registration is feasible and cost-effective when incorporated within a PBCR. Tailored training on staging can effectively enable cancer registrars to code stage on childhood cancers. Information on treatment (type and initial date) is hard to find where medical records are on paper form and stored in different systems. Active follow-up requires additional resources. Clinicians need training to include sufficient information on staging, treatment and survival in order to strengthen surveillance of childhood cancers.