Research Article: Diagnostic delay in extrapulmonary tuberculosis and impact on patient morbidity: A study from Zanzibar

Date Published: September 6, 2018

Publisher: Public Library of Science

Author(s): Melissa Davidsen Jørstad, Jörg Aẞmus, Msafiri Marijani, Lisbet Sviland, Tehmina Mustafa, Esaki M. Shankar.


Early and proper treatment of tuberculosis could have an important impact on the morbidity, mortality and the economic situation of patients. There is insufficient knowledge on the extent of diagnostic delay and the associated factors in extrapulmonary tuberculosis (EPTB). The aims of this study were to assess the health care seeking behaviour, EPTB knowledge and diagnostic delay in presumptive EPTB patients at the main referral hospital in Zanzibar, factors associated with longer delay, and the impact of untreated EPTB on self-rated health.

Prospective data collection using a semi-structured questionnaire in patients presenting with symptoms suggestive of EPTB. The time between the onset of symptoms and first visit to a health care provider (patient delay), and then to the initiation of treatment (health system delay) and total delay were analysed according to sociodemographic and clinical factors and health care seeking trajectories. The EQ-5D-3L was used among the adult EPTB patients to assess the impact of treatment on self-rated health.

Of the 132 patients with median age of 27 years (interquartile range 8–41), 69 were categorized as TB cases and 63 as non-TB cases. The median patient, health system and total delays were 14, 34 and 62 days respectively, among the EPTB patients. A longer health system delay with repeated visits to the same health care level was reported. Significantly better self-rated health status was described after treatment. The knowledge regarding extrapulmonary disease was low.

Many EPTB patients, presenting to the main referral hospital in Zanzibar, experience a long delay in the initiation of treatment, specially patients with TB lymphadenitis. The health system delay is the major contributor to the total delay. The improvement of self-rated health after treatment implies that timely treatment has the potential to reduce morbidity and the economic loss for the patient.

Partial Text

Tuberculosis (TB) continues to be a major global public health problem. In 2015, the World Health Organization (WHO) estimated that there were 10.4 million incident cases of TB worldwide [1]. Of the notified new cases, extrapulmonary TB (EPTB) accounted for 15% of the cases [1]. The proportion of EPTB is higher in females [2–6], people with African or Asian origin [2–4], TB and human immunodeficiency virus (HIV) co-infected patients [2, 3, 7] and at younger ages [2–6].

This study found that many EPTB patients, presenting to the main referral hospital in Zanzibar, experienced significant delay from the onset of symptoms until the start of TB treatment. Even though EPTB have been reported as a predictor of longer delays [14–16, 25–27], most earlier studies have been focusing on delay and associated factors in PTB, particularly smear-positive PTB. Cases of EPTB are seldom infectious and thus have less consequences for the spread of the TB disease, and probably therefore have not been studied specifically. However, for the patients, delay in the start of treatment may results in increased morbidity and mortality. A study from South-Africa [28], reported increased mortality when provider delay was ≥ 30 days. Further, TB poses an economic burden on affected patients and their household [29, 30]. In our study, 83% of the adult EPTB patients reported that they had completely stopped working or had reduced working capacity due to the current illness, a finding similar to a study from Kenya [30], where 85% of the respondents reported a decrease in the number of hours worked per week as a result of TB illness. Further, the adult EPTB patients in our study reported significantly higher self-rated health using the EQ VAS and described lesser problems in the EQ-5D descriptive system after TB treatment. Thus, this indicates that reducing the delay in the diagnosis and treatment of EPTB could decrease patient morbidity and have a positive impact on the economic situation for the patients and their families.

Many EPTB patients presenting to the main referral hospital in Zanzibar had delay in the diagnosis and treatment exceeding two months, and the greatest proportion of this delay occurred due to the health system delay. The self-rated health among adult EPTB patients was significantly higher after treatment, implying that appropriate and timely treatment of EPTB disease have the potential to reduce morbidity and the economic loss for the patient and their families. A reduction of diagnostic delay could be achieved through strengthening the knowledge and awareness of EPTB in the general population by incorporating information on EPTB in public health educational campaigns, continuous training of all health care providers, at all levels, in early recognition of symptoms suggestive of EPTB and the diagnostic possibilities, proper information and a scheduled follow-up of patients receiving a trial of antibiotics and strengthening the collaboration between the national TB programme and private and public health facilities such as outpatient clinics and hospital wards performing invasive diagnostic procedures. Further, since most peripheral health units do not have diagnostic facilities for diagnosing EPTB it could be feasible to establish algorithms of timely referral of presumptive EPTB patients to health facilities with diagnostic capacity and higher medical expertise to shorten the care-seeking pathway. Finally, support and strengthening of the laboratories performing TB diagnostics services is of utmost importance.