Background
Tuberculosis (TB) remains a major global public health problem and continues to be responsible for ill-health among millions of people each year. In 2015, TB was one of the top ten causes of death worldwide and was ranked above HIV/AIDS as one of the leading causes of death from infectious diseases [
1]. In Ethiopia, the estimated cases of TB in 2013 were 210,000 with incidence rate of 224 cases per 100,000 people [
2]. Indeed, compared to the baseline magnitude documented in 1990 [
3], the national TB prevalence and mortality rates due to TB respectively decreased by 50.5 and 64% in 2013. However, Ethiopia is classified as one of the worst affected 30 high burden countries for TB in the world [
4], as TB continues to be the major health problem and one of the leading causes of mortality from communicable diseases.
Since 1994 the World Health Organization (WHO) has launched the Directly Observed Treatment, Short Course (DOTS), a brand name for the internationally recommended strategy for TB control. The DOTS strategy warrants to identify infectious TB patients and cure using standardized drug combination. A standardized TB prevention and control program incorporating DOTS in Ethiopia began in 1992 as a pilot in Arsi and Bale zones of Oromia regional state and later expanded to other areas of the country [
5].
Despite the improvements in TB treatment outcomes evidenced by some studies since then [
6,
7], further researches indicated that lots of problems were observed in the course of administering DOTS services in the country. For instance, indicating TB patients on DOTS had to overcome many challenges to comply with TB treatments on daily basis, studies conducted in the capital Addis Ababa pointed out its undesired implication on work and social lives as emerging problems of TB patients. Coupled with lack of or high cost of transportation, daily treatment was especially very challenging and physically demanding for severely ill patients [
8,
9]. Apart from the implication it had on patients, health care professionals also pointed to difficulties in implementing facility-based DOTS as per the recommended full course [
8,
9].
Patient compliance is a key factor for the success of any treatment as quality health care outcomes depend on patient’s adherence to recommended treatment regimens. Non-compliance with TB treatment poses a significant public health threat, as it is associated with increases in transmission rates, morbidity, and costs to TB control programs [
10]. Moreover, non-compliance leads to persistence and resurgence of TB and is regarded as the chief cause of relapse and drug resistance [
11]. However, significant proportion of TB patients in many countries stop treatment before completion [
12]. In Ethiopia too, considerable number of patients non-adhere to TB treatments at different stages. A study conducted in Addis Ababa showed that 19.6% of patients were non-adherent at the early stage of TB treatment and 25% were non-adherent at the end of the treatment [
13]. Another study in the same study area indicated that 3.7% of TB patients died during follow-up, 5.1% were reported as defaulters, and 0.4% were documented as treatment failure [
14].
Although interplay of factors determine TB treatment adherence and outcomes, and adherence itself is a concept that allows for comprehensive assessment of correlates of medication intake such as characteristics of the regimen, attitudes of service providers as well as socioeconomic, cultural and environmental factors [
15,
16], many studies merely addressed the knowledge, attitude and beliefs about TB treatment. Some of these researches centered their analyses on the influence of patients’ understanding about duration of treatment and consequences of defaulting as determinants of adherence to treatment [
10,
17]. Focusing exclusively on such patient-related personal factors, therefore, these studies failed to accord due emphasis to other contributing factors, including socioeconomic and health service-related associates, that also influenced patients’ decision to either adhere or non-adhere to required medication follow-ups.
Holistically exploring TB patients’ experiences and perceptions on associates of adherence to medications, as attempted in this study, is thus crucial for designing proper and alternative interventions through patient-centered approach by concerned bodies. In addition, asking patients about the services they obtained is considered as a vital quality indicator of health service. A study with such approach, by providing information on facilitators and barriers to adherence, produces essential inputs to improve treatment outcomes as well as to reduce the spread of drug-resistant TB. Bearing in mind the need for continual assessment of DOTS implementation and gaps identified in this regard, therefore, this study aimed to assess patients’ experiences and perceptions on associates of TB treatment adherence in public health centers providing DOTS service in Addis Ababa, Ethiopia.
Discussion
Among the total of ten TB patients who participated in the study, one reported missing medications and few patients disclosed missing the exact time of taking medications as recommended by health care professionals. Identified from the analysis of the qualitative data, findings of the study came up with four major themes on TB patients’ experiences and perceptions regarding factors related to DOTS adherence: patient-related, health service-related, therapeutic, and socioeconomic factors.
Beliefs and perceptions on curability and treatment, causes and transmission, and prevention of TB; substance use; forgetfulness; perceived risks of non-adherence to medication; and perceived wellness were the sub-themes categorized under patient-related factors. Almost all participants believed that TB is curable if medication is taken properly and followed for 6 months, and if use of substances/drugs is avoided. Seen in relation to adherence, belief in the curability of TB was similarly mentioned as a factor that positively influenced adherence to treatment in another study [
20]. As opposed to these participants’ knowledge on duration of TB treatment, other studies carried out in Asia reported that the long treatment period was poorly understood by patients [
10,
21].
Consistent with finding of a study conducted in Addis Ababa [
20], most participants, however, had misconceptions regarding the cause of TB, for they reported cold air and contaminated food as causal factors. Contrary to their misconceptions and lay beliefs on TB causation, most informants were well aware of its transmission and prevention as they correctly pointed out that TB is transmitted through coughing, expectorate, and breathe from TB patient, and prevented by covering mouth when coughing, putting expectorate in distance, and opening windows in public places. They were also aware that extra pulmonary TB is not transmittable.
For patients who reported to have the experience of not taking their medication on time and missing doses of medications, forgetfulness was one of the reasons behind such interruptions. In line with reports indicating adherence appeared to be facilitated where patients understood the importance of fully completing treatment [
10,
17], participants of this study were aware of this requirement to restore their health and commonly mentioned perceived risks of non-adherence to medication including relapse of the disease and cause of MDR TB which is difficult to treat and could lead to death.
Perceived wellness was also one of the reasons reported by some patients for the intention they had to discontinue their treatments. Correspondingly, patients in India and Pakistan stopped treatment because they felt better and perceived they were cured [
17,
21]. While a case report in Malaysia also indicated that false perception of being cured was a reason for non-adherence [
22], a study in Thailand reported perception of health status was statistically associated with adherence to treatment [
23].
Health service-related factors (accessibility, waiting time, patient-provider interaction, patient’s preference, and health care evaluation) indicated that health facilities were located close to patients’ residences, supporting the view that patients could regularly attend treatments if their home were close to a clinic. But, even for the few participants who reported their homes were far away from the DOTS provision centers and costly for transportation services, the issue of accessibility in terms of physical distance posed no difficulties and inconveniences to their TB treatment follow-ups.
This finding was against a qualitative study that indicated daily visits to health facilities for DOTS in Addis Ababa was difficult because of distance from patients’ residence, lack or high cost of transportation and undesired implications on their work and social lives [
9]. These differences could be explained in terms of two interrelated factors. First, it might be due to the expansion of health facilities that provided DOTS service in the city, which in turn might have improved access to treatment. Secondly, since daily DOTS visits was implemented only for the first 2 months, this might have resulted in the favorable experience of following TB treatments without difficulties by participants of the present study.
As to the finding of this qualitative research, patients generally reported they were able to meet the health care professionals at the centers only after waiting for few minutes (maximum of 5 min), and only few of them said they sometimes experienced longer waiting times because the professionals came late to the health facilities. Studies identified that problems manifested at health facilities included long waiting times, queues, and inconvenient appointment times [
10,
21,
24], and reported that patients experienced difficulty in accessing treatments because of inconvenient opening hours of centers and provider absenteeism [
21,
25].
Concomitant to their reported interaction dominated by mutual understanding and respect, the patients generally had good and smooth relationships with their main and regular DOTS service providers. Besides their warm greetings and hospitality, the providers’ attentive listening, enthusiastic understanding, polite answering as well as curious follow-up of their health status were among the indicators of smooth interaction and relationship commonly mentioned by participants of the study. However, few TB patients who had the experience of taking their medications on weekends (days off) by other professionals from other wards reported encountering unethical behaviors from the health care providers.
According to a previous local study, while supportive relation with health professionals contributed positively, lack of adequate communication was among barriers to treatment adherence [
26,
27]. Another study in Addis Ababa also showed that DOTS was provided with limited patient-centered TB care [
28]. Similarly, confirming patients’ relationship with treatment providers appeared to influence adherence, researches carried out in other parts of the world revealed that poor follow-up by providers in Indonesia and India [
29,
30] and maltreatment by providers in India, Pakistan and Burkina Faso [
17,
21,
31] resulted in non-adherence, whereas other studies set in Vietnam, Pakistan and Mexico noted the positive impact of increased provider-patient contact on adherence [
10,
25,
32].
Adherence to treatment is facilitated by flexibility and patient choice regarding the number of professionals providing treatments, literatures suggested. Although more than half of the participants preferred treatment follow-ups provided by a single and the same professional, most of them reported receiving DOTS service by two or more health care providers. Such preferences for one and the same service provider throughout the treatment period were based on participants’ reasons that a new health professional might be unaware of previous problems, be uneasy to discuss and familiarize with, not refer to previously recorded medical record, and have miscommunication with existing service providers.
The participants generally evaluated the DOTS services they received as very good, and commonly mentioned health care providers’ good and respectful relationship with patients, free of charge provision of treatments, nearby location of centers, and generally instant provision of services as reasons behind their positive evaluation. Areas for future improvement suggested by patients included the needs to monitor and take corrective measures on health care providers working in other departments regarding their behavior and way of treating TB patients, avail distal water, refer difficult cases, increase number of professionals at different rooms to reduce the workload and patients’ queue, and to provide TB treatment service to a given patient by one and the same professional throughout the treatment period.
Medication side effect was the therapeutic theme identified and analyzed in this study. Most of the participants experienced side effects but also reported that the side effects disappeared after their adaptation to the medication, and only few told they did not experience any. Although a study mentioned experiencing side effects as barrier to adherence [
26] and some other studies conducted in Asia noted that patients who felt worse than before treatment might be more likely to interrupt treatment [
17,
21], no participant in the present research reported missing medication or having the intension to discontinue treatment as a result of medication side effects.
With regard to socioeconomic issues, while food accessibility and consumption represented economic influence on TB treatment adherence, social support and discrimination were the social factors considered in the study. Unlike the adherence barriers of lack of food and economic constraint reported in another study [
26], the present study indicated that almost all the patients, except one, were able to get food whenever they needed to. Congruently, almost all participants, except one, reported the medication increased their appetite for food. In accordance with results demonstrating the presence of support from families positively influenced treatment adherence [
26], almost all study participants reported having the required support from their respective family members. In line with reports stating family support, including financial assistance, collecting medication, and emotional support, appeared to be a strong influence on patient adherence to treatment [
10,
24,
25,
30], patients interviewed in this study commonly mentioned getting necessary food items like milk and egg through their family members’ or colleagues/friends’ help in kind or finance as well as in preparation, reminders of medication time, and emotional support.
Finally, although most participants experienced no discrimination, few reported experiencing discriminations from family members due to the misinformation disseminated by reception and medical record room workers and from some community members due to lack of awareness and non-scientific personalistic understanding of TB causation. In comparison, a study reported that in some cases, patients on treatment became demoralized and non-adherent as social support weakened [
21].
Conclusions
The patients’ experiences and perceptions on associates of TB treatment adherence, based on an in-depth interview of ten TB patients receiving DOTS services in two public health centers in Addis Ababa, indicated that most patients adhered to their medications, but few experienced missing the exact time and doses of medications mainly due to forgetfulness. In addition to their understanding that TB is curable disease, participants knew the duration of treatment and side effects of medication as well as the negative consequences of discontinuing and effect of substance use on the therapeutic course.
Adding to factors that influenced adherence to DOTS positively, most patients were also well aware of the transmission routes and prevention mechanisms of TB. Nevertheless, most informants had misconceptions on TB causation. While perceived risks of non-adherence to medication was one of participants’ personal factor to adhere to the DOTS service, perceived wellness was the reason behind the intention they have had to discontinue their TB treatments.
The participants generally had positive evaluation of the patient-provider relationship and the health care obtained from DOTS service, albeit unethical behaviors of providers from other departments and reception rooms encountered by few TB patients. Even though more than half of study participants preferred treatment follow-ups provided by a single and the same professional, most of them received DOTS service by two or more health care providers. Physical accessibility of health facilities and the waiting time therein posed no difficulties in pursuing DOTS service follow-ups of all interviewed TB patients. In addition, although most interviewed TB patients experienced medication side effects that eventually disappeared after the intensive treatment phase, no participant reported missing or having the intension to discontinue medication due to this therapeutic factor.
Nearly all informants were able to get necessary food items and had increased appetite for food after commencing DOTS. Most also acquired required social supports and experienced no discrimination for being TB patient. However, some were discriminated by their family due to the overstated misinformation disseminated by supportive service providers to patients’ attendants and by some members of their community because of non-scientific understanding of TB causation.
The two health centers in which this qualitative study was conducted need to train and monitor occasional DOTS service providers from other departments regarding their behavior and way of treating TB patients, regularly avail distal water for injection, refer complicated cases, increase number of TB treatments rooms and regular DOTS service provider professionals, and to provide TB treatment service to a given patient by one and the same professional throughout the treatment period.
Findings of the study additionally implied the necessity of undertaking awareness creation activities, particularly regarding TB causation, targeted towards addressing both patients and members of their community. Moreover, social support, especially in reminding patients the time of medication, need to be improved as forgetfulness was a factor behind non-adherence.