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Research Article

# Quantifying the Burden of Rhodesiense Sleeping Sickness in Urambo District, Tanzania

• Affiliations: Tabora Research Centre, National Institute for Medical Research, Tabora, Tanzania, Centre for Infectious Diseases, School of Biomedical Sciences, College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, United Kingdom

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• Affiliation: Ashworth Laboratories, Centre for Infectious Diseases, School of Biological Sciences, College of Science and Engineering, University of Edinburgh, Edinburgh, United Kingdom

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• Affiliation: Tabora Research Centre, National Institute for Medical Research, Tabora, Tanzania

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• Affiliation: Centre for Infectious Diseases, School of Biomedical Sciences, College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, United Kingdom

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• Affiliation: Division of Ecology and Evolutionary Biology, University of Glasgow, Glasgow, United Kingdom

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• Affiliation: AP Consultants, Abbotts Ann, Andover, United Kingdom

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• sue.welburn@ed.ac.uk

Affiliation: Centre for Infectious Diseases, School of Biomedical Sciences, College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, United Kingdom

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• Published: November 02, 2010
• DOI: 10.1371/journal.pntd.0000868

## Abstract

### Background

Human African trypanosomiasis is a severely neglected vector-borne disease that is always fatal if untreated. In Tanzania it is highly focalised and of major socio-economic and public health importance in affected communities.

### Objectives

This study aimed to estimate the public health burden of rhodesiense HAT in terms of DALYs and financial costs in a highly disease endemic area of Tanzania using hospital records.

### Materials and Methods

Data was obtained from 143 patients admitted in 2004 for treatment for HAT at Kaliua Health Centre, Urambo District. The direct medical and other indirect costs incurred by individual patients and by the health services were calculated. DALYs were estimated using methods recommended by the Global Burden of Disease Project as well as those used in previous rhodesiense HAT estimates assuming HAT under reporting of 45%, a figure specific for Tanzania.

### Results

The DALY estimate for HAT in Urambo District with and without age-weighting were 215.7 (95% CI: 155.3–287.5) and 281.6 (95% CI: 209.1–362.6) respectively. When 45% under-reporting was included, the results were 622.5 (95% CI: 155.3–1098.9) and 978.9 (95% CI: 201.1–1870.8) respectively. The costs of treating 143 patients in terms of admission costs, diagnosis, hospitalization and sleeping sickness drugs were estimated at US$15,514, of which patients themselves paid US$ 3,673 and the health services US$11,841. The burden in terms of indirect non-medical costs for the 143 patients was estimated at US$ 9,781.

### Conclusions

This study shows that HAT imposes a considerable burden on affected rural communities in Tanzania and stresses the urgent need for location- and disease-specific burden estimates tailored to particular rural settings in countries like Tanzania where a considerable number of infectious diseases are prevalent and, due to their focal nature, are often concentrated in certain locations where they impose an especially high burden.

## Author Summary

#### Indirect costs incurred by HAT patients for the period of their stay in hospital

Apart from the costs incurred by every individual patient on admission costs, each patient required an additional of US$63.40 which were indirect non-medical costs to cover their travel costs, meals and accommodation for one accompanying person during their 25 day stay in hospital. Other costs such as costs incurred by health providers were not estimated in this study since Kaliua is a missionary hospital and most of the care providers are based on voluntary basis. Table 2 shows how these indirect costs were estimated for each individual patient. For the total number of 143 patients at Kaliua this would then come to US$ 9781.20.

### Discussion

Findings of the present study show that the re-emergence of HAT in Urambo district continues to impose a significant burden on health care systems as well as communities affected by the disease. The study utilized datasets from hospital records combined with estimates of under-reporting of T. b. rhodesiense HAT in the district. The disease is severely neglected and does not appear among the top priority diseases in any of the disease endemic districts of Tanzania. Notably, the sporadic nature of zoonotic HAT results in cases being recorded as other conditions in hospital reports, health-care seeking for HAT can be prolonged and frustrating [25] and many cases are not reported at all because the affected patients fail to reach health facilities. This study demonstrates the importance of conducting disease-specific burden assessments in local settings [10] as they provide useful epidemiological data that can be very useful in the planning, prioritisation and proper allocation of limited resources in rural areas.

The present study showed that nearly ¾ of HAT cases presented to health facilities in late stage of the disease, and almost all (98%) most presented passively. Late stage presentation has serious consequences; delays in seeking care result in reduced chance of complete cure and late presentation increases the risk of drug-associated adverse effects and the chances of treatment failure which can both result in death [26]. Late stage HAT patients suffer a much greater burden per episode and enormous stigma as the disease may be mistaken for AIDS because both diseases share clinical similarities. One explanation for late hospital presentation is that patients spent much of the early stage seeking health support from alternative sources and only after failing to recover do they decide to seek referral medical attention [25], [26]. There are no effective traditional treatments for HAT and HAT drugs are not available in any pharmacies.

Evidence shows that people often seek basic health services from more than one source, including local drug stores and occasionally traditional healers [25], [26]. These studies observed that about 20% of the communities living along the Tanzanian coast used no health services at all - an interesting finding since communities living along the coast may be considered to have a higher level of awareness on health matters and also a better health services as compared to most of the rural communities in remote areas of western Tanzania where the present study was conducted [27].

This paper presents the first assessment of the burden of rhodesiense HAT for Tanzania and only the second for East Africa. Some studies on the burden of other neglected diseases and zoonoses have been undertaken for Tanzania including the burden of brucellosis [28]. Its findings which are consistent with ours, both diseases show high burden that impact on local health systems as well as communities.

Estimating disease specific burdens for individual conditions can be useful, particularly when such studies use local data and can be applied at the local level. Assessments do not require much additional resource at the local level, while the results can inform local systems with regard to disease prioritisation. Improvements in record keeping should be a priority for local health facilities wishing to improve the evidence-base for resource-allocation decisions.

Previous burden of disease studies conducted in Tanzania estimated that the country loses 10 million years of life annually through illness and death. This amounts to four months of life lost per year for every man, woman and child in the country [29]. Our study also shows that families incur very substantial costs to maintain their sick family members in the health system while being treated for HAT. HAT patients require assistance with almost all activities of daily living [25], and the majority of the villages from which HAT patients arise are located far from the treatment centres. The distance to health facilities has been associated with serious delays in seeking health care services [25], [30]. It is clear that families with HAT patients will require substantial financial capacity to cover transport costs as well as maintain their patients in hospital for a prolonged duration.

The majority of affected communities are poor and have other priority health conditions to attend to (infectious diseases as well as non communicable diseases). Evidence from other rural areas of Tanzania suggests that some communities could not afford a user fee even as small as TZS 500 (approximately US$0.50) which represents the charge for a basic laboratory investigation [31]. The majority of families living in rural communities live below the poverty line. Studies conducted in rural districts of Tanzania during 1990–1996 suggested that 26% of rural communities were subsisting on less than US$ 1 per person per day [32]. For families in rural communities to spend such huge amount of money for diagnosis of a family member is a serious financial burden. That burden is likely to be more severe if the patient is the bread-winner, as other family members will need either to do their work on the farm or produce earnings to cover the gap caused by the sick family member - not an easy task for rural settings where employment is almost non-existent. Even if a HAT patient obtains treatment, full recovery takes several months before a patient can return to productive activities. In some cases patients may develop serious long term or even permanent complications.

Several other authors have associated household income and disease burden. A study conducted in Tanzania suggests that the majority of the rural population suffers the combined burden of diseases as most of the socio-economic activities carried at the household level does not provide sufficient resource to cover their basic health needs [33]. In Kenya, households could not afford to buy a mosquito net to protect themselves or their family members from malaria [34]. The first study of its kind to look at patients' costs for HAT [35] estimated that patients spent the equivalent 1.5 months of income on costs, rising to nearly a quarter of a year's income if their time off work were included. For HAT, in the Democratic Republic of Congo (DRC) it was found that household incomes were so limited and the costs of HAT treatment was considered to be so high that this was likely to compromise the timely receipt of medical care [35]. In DRC, patients' average financial costs came to 5 months of income and were as high as 10 months for some individuals. For families living on less than US$1 per day in Tanzania, the cost of US$ 68.40 of indirect non-medical costs plus US\$ 25.50 of direct medical costs per patient represents a similar proportion of income.

Patients and their family members with in a household often take a long time to prepare for receiving health care and, in most cases, such preparations depend on the solidarity of family members and sometimes even community support [36]. Similarly, household members take time to ready themselves and to mobilize resources, before they seek HAT treatment on behalf of or accompany [12], [36]. In DRC it was observed that despite the communities' acceptance of active screening, the introduction of a ‘symbolic’ card fee was a major obstacle to treatment-seeking behaviour [37]. This is likely to cause very serious consequences for the household and may even compromise other family commitments such as provision of basic education to school children and even food provision to the rest of the family members.

Our study also observed that the high disease burden of HAT was largely attributed to high levels of disease under-reporting in Urambo, which suggested that for every reported case of HAT nine went un-reported [18]. Previous under-reporting studies in Uganda estimated that for every 10 reported cases of HAT, 7 went unreported, and, since untreated patients die, this meant that for every HAT death reported to health systems, twelve others went undetected [12]. Our studies also observed that HIV/AIDS pandemic may have contributed to increase the burden of HAT in Tanzania. Despite health reforms in Tanzania, expecting districts to move from managing diseases to managing health systems from an equity perspective is thought to be unrealistic [38]. The poorest societies carry the heaviest burden of diseases and it is therefore difficult for any health system to target the very poor accurately.

A recent study [32] observed that poorer families were less active and effective in seeking health care than their relatively wealthier counterparts even in rural societies that were assumed to be uniformly poor. Despite Tanzania having the higher health care seeking rates than many countries in sub-Saharan Africa, health inequalities between the very poor and wealthier families were obvious [38]. Members of better off families had higher chances of obtaining suitable treatment once ill, than did those from poor families.

There are some inherent limitations of using the decision tree model for under-reporting in Tanzania that was originally designed for Uganda. The data used to construct that model were derived from an area with better health coverage and better equipped health facilities [11] than in the area of Tanzania where this study was conducted, where most health facilities do not have even basic diagnostic equipment such as microscopes.

One of the major control challenges for HAT is the resurgence of both the gambiense and rhodesiense forms of the disease, which has been observed for rhodesiense in Tanzania as well as in many other disease endemic countries of sub-Saharan Africa. Some of the recent examples of these resurgences have been reported in several countries [14], [15], [39], [40], and there have also been reports of the occurrence of new foci of HAT in many areas of sub-Saharan Africa including Uganda and Tanzania [41], [42]. This resurgence was linked to a lack of adequate knowledge regarding disease trends as well as of the control options in many of the affected communities as well among some policy makers [7], [43]. This in turn was linked to the lack of sufficient resources to sustain regular surveillance activities. This stresses the urgent need for disease specific burden estimation in such communities, as it will allow proper allocation of the limited available resources in poor communities. Zoonotic HAT affects both rural communities as well as the animals. Previous studies observed that the lowest level of effective health seeking behaviour was observed among livestock keepers [30]. Control needs to be targeted at both humans and animals and needs to be a shared responsibility between medical and veterinary sectors [44].

Being one of the most neglected diseases, in most cases HAT is not considered an important disease in most of the affected communities as there is a tendency for policy makers to rank the disease according to their importance in the communities simply by looking at national mortality figures. Findings from our study demonstrated that HAT consumes a very significant proportion of workforce resource, time and hospital space. Also the results of this study demonstrated the importance of conducting disease-specific burden studies, particularly in rural settings rather than generalizing using regional or national figures, reinforcing the conclusions of earlier work [10]. There is a need to target the limited available resources more efficiently so as prevent future outbreaks. In deciding areas requiring prioritisation it is important to use estimates from community perspectives. Local burden of disease estimates are important aspects as they provide good epidemiological data which can be used for timely planning and proper resource allocation in most of the local health care settings and inform disease prioritisation in rural settings.

### Acknowledgments

The authors wish to thank the Ministry of Health and Social Welfare, Tanzania through the National Institute for Medical Research for allowing us to conduct this study in Tanzania; we are also grateful to the staff at Kaliua Health Centre, Urambo, Kibondo District Hospital, Kasulu District and Kabanga Missionary Hospitals (Kigoma) for their cooperation and support during data collection. The views contained in this paper are those of the authors.

### Author Contributions

Conceived and designed the experiments: LEM EMF SNK KP SC SCW. Performed the experiments: LEM. Analyzed the data: LEM EMF APS. Contributed reagents/materials/analysis tools: SNK APS. Wrote the paper: LEM SCW.

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