Delays in diagnosis and treatment of pulmonary tuberculosis in Wakiso and Mukono districts, Uganda

Uganda is among the 22 high tuberculosis (TB) burden countries. It has a treatment success of 67%, default rate of 11% and 50% of TB patients are HIV co-infected [1]. Multi-drug resistant TB (MDR-TB) poses a problem in 1.1% of new cases and 12% of retreatment cases in 2010 [1, 2]. One of the contributors to these poor indicators is due to the prolonged delay from the onset of TB disease to the time of diagnosis and initiation of treatment. Delay in diagnosis may lead to progression of disease, increased mortality and TB transmission in the community [3, 4]. Therefore, timely diagnosis and treatment is critical in TB control. Studies from Uganda and Tanzania have shown median diagnostic delays varying from 8 to 13 weeks [5‐7]). In two systematic reviews, it was found that diagnosis and treatment delays of TB occurs more often in patients with smear negative TB, HIV infection, living in a rural area and or far away from a health unit and in patients consulting with traditional healers [8, 9].

In 2009, WHO released TB infection control (TBIC) guidelines [10]. Early detection and prompt effective TB treatment are the hallmark of a successful TBIC. These guidelines recommend minimizing the time spent in health facilities, by ensuring that people with TB symptoms are rapidly identified and if found to have TB, promptly treated. Exposure to people who are infectious should be minimized by reducing the number of outpatient visits [10]. Furthermore, encouraging people to rapidly seek care if they have symptoms suggestive of TB [10]. In 2008, the Uganda Ministry of Health (MOH) in collaboration with the TB Union, through support from the Tuberculosis Control Assistance Programme implemented a two year TBIC project in 12 districts in Uganda including Mukono district. In 2010, the Ugandan MOH implemented TBIC in Wakiso district and in 2011 released national TBIC guidelines, adopted from the WHO [11]. To our knowledge no other study in Uganda has examined TB treatment delays since the implementation of TBIC. Our study assessed the magnitude of patient, health service and total delay; and their determinants in a predominantly rural setting in Uganda.

A total of 229 TB patients were prospectively enrolled from 6 health facilities (3 hospitals and 3 health centre IVs). Seventy one patients were excluded from further analysis because they were sputum negative (59) and did not have cough as one of their presenting symptoms (12), leaving 158 patients (Figure 1). The median age was 30 (IQR 25.5-38) years. Ninety six (61%) patients were males, 78 (49%) were married and 13 (8%) had no formal education, (Table 2). Patients’ median family size was 4 (IQR3-7) and they were generally living in one living room. More than half (102; 65%) of the patients lived less than 60 minutes walking distance to the facility where the TB was diagnosed. The majority of the patients, 104/157 (65%) had ever tested for HIV before TB diagnosis (Table 2). One hundred forty three (97%) respondents accepted to share their results, with 31% (45/143) reporting being HIV positive. In addition to cough, at the time of diagnosis, patients had the following symptoms: chest pain 94/157 (60%), fever 85/157 (54%), weight loss 80/157 (51%), loss of appetite 67/156 (43%) and haemoptysis 28/158 (18%).

This study performed in two Ugandan districts highlights the unacceptable delay from onset of cough to initiation of TB treatment. More than half of the patients delayed to seek medical care in the presence of cough for more than 3 weeks. Health service delay was the biggest contributor to the total delay. Patient delay was significantly associated with being male. Health service delay was significantly associated with first seeking care from a non-public health facility.

Three quarters of the total delay was due to health service delay. This proportion of the total delay is similar to what was found in a study among patients at the national referral hospital in Kampala [5]. Sendagire et al., on the other hand, in a study in Kampala City Councils clinics observed that patient and health service delay equally contributed to the delay [7]. The long health service delay in our study shows that there are many missed chances for TB diagnosis. While according to the Ugandan National TBIC guidelines, a patient with cough for 2 weeks or more should be investigated for TB [11], in our study only 15% of such patients had a sputum examination done on their first visit to the health care provider. The unacceptable health service delay is an indication of a weak performing health system. This may be because of poor knowledge of health workers about TB, resulting into a low index of suspicion for TB, and/or lack of staff, infrastructure to diagnose and treat TB. This long health service delay means that a significant number of patients remain infectious. This puts other patients in the health facilities and health care workers (particularly HIV infected) at risk of getting nosocomial TB, in addition to transmitting TB to the household members. The finding of unacceptable health service delay being associated with first seeking care from non-public health facilities (non-TB health care providers) is similar to what has been reported in other studies [9, 17]. Only public health facilities and a few private providers provide TB treatment in Uganda [7]. Therefore, non-public health facilities like pharmacies, drug shops, some private clinics and traditional healers/herbalist which do not regularly treat TB patients, may have a lower index of suspicion for TB or even no knowledge at all, compared to public facilities. Training of health workers on new guidelines like the TBIC guidelines, are mainly organized in public facilities. Thus seeking care first with a private care provider results in delays in diagnosis and treatment of TB due the longer path from the initial visit to finally accessing a TB service provider (which is usually a public health facility) [17].

The median total delay of 16 weeks observed in our study is close to what was found in other studies from Pakistan and Tanzania [18, 19] though lower than what was reported in Kampala City Councils clinics in Uganda [7]. The longer total delay observed in our study compared to previous studies conducted in Uganda [5, 7] can be explained by better access to health facilities in the urban setting. Comparing treatment delay between different studies is difficult because they often used different definitions (Table 1). According to the WHO guidelines and the Ugandan MOH TBIC guidelines, patients with cough for 2 weeks and above should be investigated for TB within 24 hours [10, 11]. Therefore, in our study we considered a delay of 3 weeks as unacceptable patient delay and a delay of more than one week as unacceptable health service delay. Adhering to these shorter delays will result in low TB transmission and thus improved TB control.

Almost half of the patients sought care within the first three weeks of cough. This is lower than what was observed in a national Ugandan referral hospital [5], where 70% of patients contacted a health care provider within two weeks of cough. This could also be explained by better access to health services in an urban setting, compared to the rural setting where our study was conducted. Almost 10% of our patients first sought care from traditional healers/herbalists. This is consistent with the findings in South Africa [20]. This highlights the need to involve traditional healers in TB control, since a substantial proportion of patients seek care from them. The patient delay observed in this study is comparable to those reported by other studies in sub-Saharan Africa [5, 7, 21, 22]. Patient delay in this study contributed least towards total delay. This is contrary to what was observed in a study from Tanzania where patient delay contributed to 90% of the total delay [23]. However the Tanzanian study used the following definition of patient delay “the period between onset of symptoms and reporting to a health facility.” In our study we defined patient delay as the period between onset of symptoms and seeking care from any health care provider. We used “any health care provider” because of the WHO recommendation to involve all health care providers in TB control [2]. Patient delay was significantly associated with being male, unlike what was observed by Mfinanga in Tanzania [24]. On the other hand, Johansson et al. in Vietnam reported that men were more likely to neglect symptoms and to seek care only when the disease gets into an advanced stage [25]. This has also been reported in HIV care, where men have been found to present with advanced disease and were more likely to be lost to follow-up [26, 27].

Unacceptable health service and total delay were associated with visiting non-public health facilities. To reduce these delays, coordination between the National TB and Leprosy Programme (NTLP) and the private sector is critical for TB control [2, 28]. Efforts to engage with private providers have already started in Uganda and this resulted in improved case detection in an urban setting [29]. But pharmacies, drug shops and traditional healers need to be brought on board. This can be achieved by the use of incentives to encourage private care providers to refer all TB suspects to a diagnostic facility [2]. However, there is a need to explore more sustainable ways on how to involve them, more particularly the traditional healers. A public-private mix in TB control is in line with the Stop TB Strategy [2]. Furthermore, there is also a need to train all health care providers to raise their level of suspicion for TB. In addition, community TB advocacy and sensitization, which is advocated in TBIC is necessary to improve TB awareness among the people and thus result in early care seeking for TB symptoms. Rolling out rapid diagnostics would also help in reducing diagnostic delay. This could for instance be done by use of the gene X-pert [2, 30, 31], but also by taking two spot sputum specimens for smear microscopy on the same day rather than on different days [32], so as to reduce patients failing to return in time or even being lost to follow up.

Our study has limitations. Being a retrospective study, imprecise estimates of delay due to recall bias among the patients could have influenced our results. This was minimised by the use of TB treatment cards and case notes. In addition, we asked patients if they thought TB was curable, before they started on treatment. This could have introduced a bias considering the health education patients are given before they start and also in the course of the treatment. We may have also introduced a selection bias by only including outpatients. The study was carried out in a few facilities (health centre IVs and hospitals) and mainly government, so this limits the generalizability of our findings. The picture could be different in lower level facilities and in private facilities. Last but not least, length of cough was used as an indicator for patient delay. However, it can start in an insidious manner and so the timing of onset of cough can vary among respondents depending on the manner they gauge the seriousness of the symptom. Moreover, we did not asses treatment delay of patients with smear negative pulmonary TB and patients with extrapulmonary TB.

This study reveals that there is still a significant TB treatment delay problem in Uganda. Our study underscores the need to involve all health care providers in TB control. TB treatment delay can be seen as a proxy indicator of health system performance. Our results point to the fact that the public sector seems to be doing better than the various private providers that operate in rural Uganda. The range of relevant actions to be considered could include: health education on TB and TBIC, further decentralization of health services, appropriate training of health care providers in TBIC and public-private partnership in TB control. Research is needed on why there is prolonged health service delay and how private care providers including traditional healers can be effectively engaged by national TB control programmes.