Exploring Barriers to Timely Diagnosis and Treatment of Tuberculosis in Selangor, Malaysia: A Qualitative Study

INTRODUCTION

Tuberculosis (TB) is an airborne communicable disease caused by Mycobacterium tuberculosis, an anaerobic pathogenic bacillus.^1,2 Tuberculosis constitutes a major threat to global health and well-being.^1,3 Although early diagnosis and prompt treatment are pertinent for effective TB control, a report in 2018 revealed that approximately 3 million TB cases were undiagnosed, especially in low- and middle-income countries.^2,3 These estimates are more likely to be exacerbated given the effects of COVID-19 on healthcare delivery, care seeking, and diagnosis of TB.^2,3

Diagnostic delay refers to a delay in the duration between symptom onset and treatment.⁴ Tuberculosis patients with diagnostic delay face a higher risk of experiencing severe disease status during presentation.⁴ Meanwhile, a healthcare system delay reflects a delay between the first visit to a healthcare facility and the beginning of treatment. Delay in diagnosis and commencement of treatment may impair treatment outcomes and increase the risk of TB transmission in the community, thereby constituting a significant barrier to TB elimination.⁴ A systematic review found that almost half of TB patients delayed seeking care for at least 1 month, with a median diagnostic delay ranging from 30 to 367 days.⁵ This delay is either patient or healthcare related, with the former attributed to challenges in accessing healthcare or stigma,⁶ whereas barriers such as inadequate testing infrastructure and poor TB screening guidelines are the predominant healthcare-related factors.^7,8

Diagnostic delay is a multifactorial problem in TB management with factors such as pulmonary comorbidities, HIV infection, poor access to care, poverty, self-medication practices, low awareness of TB, stigma, and history of immigration playing significant roles.^6,7 Overall, accumulated evidence from recent systematic reviews revealed that socioeconomic, demographic, and health-related factors are associated with delayed diagnosis and treatment of TB patients.^4,5 Diagnostic delay may also stem from events related to the clinician such as low clinical suspicion, time constraints, lack of continuity of patient care, and poor clinician-patient communication.⁸ However, the strength of these associations is shaped by the TB burden in different countries and regions.

Tuberculosis is an endemic disease in Malaysia. With a notification rate of less than 100 cases for every 100,000 people, Malaysia is currently categorized as an intermediate TB-burden country.⁹ Tuberculosis is also notifiable by law in Malaysia, as stipulated in the Laws of Malaysia Act 342 – under the Prevention and Control of Infectious Diseases. About 91% of TB cases in Malaysia are pulmonary TB.⁹ To address the TB burden, the Malaysian government has implemented diverse strategies aligning with the WHO’s End TB Strategy goals. Examples include collaboration between the National HIV/AIDS Control Program and the National Tuberculosis Control Program, aimed at adjusting guidelines and case management protocols for TB.¹⁰

Nonetheless, notified TB cases continue to rise in Malaysia.^10,11 Incomplete treatment, a high default rate, and the presence of resistant strains are among the factors that perpetuate persistent TB transmission in the community.⁶ Events such as loss to follow-up and poor medication adherence have also contributed significantly to poor treatment outcomes.^12–16 Accumulated evidence from studies conducted in Malaysia reflects that patient-related factors constitute the main challenge to TB management and control strategies. A few studies conducted in Sabah and Sarawak revealed that the duration between the onset of major symptoms and the first medical consultation was 30 days, and delayed health-seeking behavior and limited access to TB care accounted for 20–30% of total TB cases.^16,17

In relation to patient factors, involving those who are most affected by TB in research and intervention programs has been increasingly recognized as a strategy to ensure equitable and culturally appropriate access to care.^18,19 Nevertheless, there is a dearth of information on the feasibility and progress of existing programs. This research gap can be bridged by understanding the lived experiences and realities of TB patients and the general public, who constitute the main targets of TB management programs.^20,21

Despite the TB burden of Selangor topping the list in Malaysia, there are few published data on diagnostic and healthcare system delays, particularly from the lived experiences of TB patients in the country. Elucidating real and perceived barriers faced by TB patients and other key stakeholders is pertinent to developing effective interventions and addressing the identified issues. This study aimed to assess patients’ perspectives regarding the determinants of delayed presentation, diagnosis, and treatment of TB among patients in Selangor, Malaysia.

MATERIALS AND METHODS

RESULTS

DISCUSSION

This study comprised a combination of FGD and in-depth interviews to understand patients’ perspectives of events surrounding delayed presentation and diagnosis of TB. Several factors contribute to the delayed presentation of TB, which varies significantly in different populations and healthcare settings. Given the high burden of TB in Selangor, this study provides first-hand evidence from TB patients to elucidate the barriers and facilitators of seeking medical attention for TB diagnosis and treatment, thereby assisting in designing locally tailored interventions to address patient and hospital delays.

Descriptively, most of the participants in the survey were males and had formal education, which is consistent with a former cross-sectional study on the prevalence and risk factors for TB in Malaysia.^16,17 All the participants were Muslims and Malays, which equally reflects the demographic distribution of the Malaysian population. Six of the TB patients had a history of smoking, either current smokers or having quit smoking. Similarly, Goroh et al.¹⁶ found that one-third of TB patients were smokers based on the trend from 2012 to 2018.

The first theme that emerged from the thematic analysis was health-seeking behaviors, which comprised post-treatment reaction, first treatment provider, perception of healthcare facilities, life after TB, and satisfaction with treatment. Participants shared both negative and positive reactions upon knowing their positive TB status. Tuberculosis patients reacted differently upon being diagnosed or informed about their positive status, which may be linked to their prior perception and awareness of the disease. Those reacting positively immediately after diagnosis might be aware of possible sources of exposure to the pathogen or know that the disease is treatable.^23–26 Nevertheless, the diverse reactions reflect the need for proper education and enlightening patients regarding the importance of prompt detection and treatment. In addition, community awareness programs could be implemented to raise people’s understanding of TB.

Meanwhile, government hospitals or private clinics were the first health facilities visited by most TB patients, which corroborates the results in previous local studies.^7,16 Accessibility and previous experience with these healthcare providers might contribute to this finding as documented in studies conducted elsewhere.²⁷ Related closely to this finding was overall patient satisfaction with the treatment received from the health facilities. The TB patients described the treatment received either as efficient or good, which could stem from the fact that they had already completed their 6-month treatment course for TB. The good outcome and absence of clinical manifestation of the disease might contribute to patients’ perception of the treatment received.

A subtheme termed “life after TB” was also gleaned from the thematic analysis under the theme of health-seeking behavior. The findings demonstrated the impact of TB diagnosis and treatment on patient lifestyle and behaviors. Some of the participants had already quit smoking, whereas others had stopped touring different countries after their TB journey. This result aligns with the concept of the Health Believe Model, whereby the cue to action is influenced by perceived susceptibility, perceived seriousness, perceived benefits, perceived barriers, perceived threats, and self-efficiency.²¹ Tuberculosis patients in this study understood the perceived susceptibility and perceived threats associated with the disease, thereby influencing their cue to actions in engaging in lifestyle or activities that might increase their risk of exposure.

The second theme identified in this study comprised patient and healthcare-related factors, as well as events contributing to delayed presentation and diagnosis of TB, composed of distance to a healthcare facility, awareness of the nearest health facility, the specific health facility visited or the first health personnel consulted, and poor health-seeking behavior (low suspicion index). These results indicate that distance and time spent before seeing a consultant or clinician influenced patients’ decisions to visit TB care centers or healthcare facilities, as reported in studies conducted in other countries.^23,27–29 Having to move a long distance before reaching a hospital or clinic is time-consuming and not cost friendly, thereby discouraging TB patients from seeking treatment and leading to late presentation.

Prolonged waiting time at directly observed treatment was also a predictor of early treatment interruption in a recent study undertaken in Malaysia among TB patients.^30,31 Likewise, the factors reported to influence the delayed presentation of TB patients in Sabah were poor transportation systems and challenging topography,¹⁶ which align with the present results. Notwithstanding, awareness of the availability of such facilities, specifically TB care centers, is equally important for individuals in order to seek prompt diagnosis and treatment. Overall, these events need to be supported with good health-seeking behaviors with an acceptable suspicion index.²⁵

The present study regarding delayed presentation has important implications for the management of TB patients in Selangor. The likelihood of achieving a positive immune response and successful management is higher when TB is detected early, followed by immediate treatment. Meanwhile, patients delaying presentation to healthcare centers for 1 month or more are possibly at advanced stages of the disease and manifesting severe symptoms.³² These events will increase the burden on existing healthcare facilities given that patients may have to be admitted for advanced care or subjected to more intensive management. In addition, the economic burden on patients and the healthcare system increases accordingly, especially when patients are responsible for their treatment expenditures.⁶

Tuberculosis patients in this study relayed the difficulties faced in managing their diseased status given their low socioeconomic status. Most complained that financial assistance was insufficient to cater to their needs upon contracting the disease. These factors were also identified in previous studies, as household income and financial insecurities were positively associated with the prevalence of patient delay and poor adherence to treatment protocol.²³ Patients facing socioeconomic challenges are more likely to delay visits to healthcare centers given that they must concurrently cater to their families and healthcare expenditures despite having limited sources of income.

Furthermore, we observed that low socioeconomic status, financial constraints, and perceived stigmatization were among the key challenges faced by patients with TB. Tuberculosis patients used various sources of funds for treatment, comprising personal savings and financial support from religious members or organizations set up by the government. Nevertheless, most TB patients still needed financial assistance to support their current primary sources of income. Although a clear role of financial constraints can be gleaned from this study, the issue of stigmatization as a potential challenge to seeking prompt care and diagnosing the disease requires further clarification. The participants in the FGD shared diverse views relating to stigma either from their inner feelings or interaction with family members, friends, and immediate society. Further analysis reflects that the socioeconomic status of the patients seemed to shape their opinion and the perceived stigmatization they might face in their immediate household and community. For instance, the few respondents who delayed seeking care and remained isolated in their homes were relatively from a low socioeconomic class. Similar events were raised by TB patients responding to the surveys conducted in Nigeria²⁴ and Sudan.²⁵ More importantly, these studies reflected positive associations between longer patient delay and TB patients reporting perceived stigma. On the other hand, a few respondents decided to stay indoors in line with the recommendations from healthcare professionals and the workplace. Despite highlighting the stigma they might have encountered if they continued to go to work, such perceived stigma did not translate to delayed treatment or diagnosis of the disease among this group of respondents. Previous studies have also highlighted how perceived stigma may be influenced by interaction between healthcare providers and TB patients.^16,26 Nevertheless, there are no reports to infer such events in the present study, as no respondent linked their perceived stigma to their engagement with healthcare workers.

Another key finding in this study was the diverse knowledge of TB in terms of the causes, risk factors, and treatment and their association with delayed presentation. For instance, although some patients were aware of the symptoms, others posited that they had never heard of the disease and were unaware that cough is a common sign of TB. Such poor knowledge persisted even after treatment, as some patients even doubted the cure of TB during treatment. Alarmingly, one of the participants claimed “not to be aware of being infected with TB even while coughing with blood.” These findings are supported by a recent study conducted in Sabah in which poor patient knowledge influenced the delayed presentation of TB patients to healthcare facilities.¹⁶

In contrast, another participant exhibited a high suspicion index by reporting immediately upon experiencing cough and body pain. Poor knowledge of TB has also been reported in previous studies to increase the odds of patient delay.^23–26 Patients who are fully aware of the symptoms and consequences of late presentation and delayed treatment are more likely to visit healthcare centers for diagnosis and management. Such patients will thus avoid any delay in seeking treatment at nearby hospitals. However, some patients with good knowledge of TB symptoms and medication might also engage in self-management, which could result in delayed presentation.²⁶

The last theme focused on suggestions to address the factors contributing to delayed treatment of TB patients. For instance, patients also gauged their current knowledge of TB and suggested that educating people to enhance their awareness of the disease is crucial in reducing problems associated with visiting appropriate TB centers or the nearest health facilities and with delayed presentation. These recommendations coincide with the conclusions drawn from prior studies in which educating high-risk populations of TB was seen as the most practical and feasible approach to addressing patient and treatment delays.^26–28

Our findings revealed the importance of family and social support during TB management, particularly from patients’ spouses, siblings, and children in the form of motivation, care, prayer, and assistance during routine activities in the health facility. These events formed a strong support system that was vital in combating issues relating to stigma and harassment either from family members or the community. Such events will ultimately encourage individuals to consult the appropriate centers for diagnosis and treatment if necessary. Social support from family members and the immediate community has been shown to positively impact compliance and treatment and enhance the psychological well-being of TB patients.²⁹ On the other hand, poor compliance with TB therapy is associated with drug resistance, chronic infection, and mortality.³⁰ Support from the family and community is also vital in addressing the stigma of TB—one of the key factors contributing to delayed presentation and diagnosis. The present finding coincides with that of Goroh et al.¹⁶ who found that stigmatization of TB patients was a strong determinant of patient delay in the Borneo region of Malaysia

Other important suggestions highlighted by TB patients during the FGD include improving accessibility to healthcare facilities, providing specific clinics, and proximity of health facilities to facilitate a prompt response, minimize cost, increase the capacity to isolate infected persons and provide adequate treatment. These recommendations represent the opinions of the respondents; however, the feasibility of implementing some of the measures remains debatable. For instance, establishing specialized TB clinics may constitute a costly approach given the material and human resources required. Moreover, there are existing centers designed for the management of infectious diseases in all government hospitals in Malaysia. There are no clear-cut advantages of establishing specialized centers in terms of the management of TB. In addition, attempting such will also necessitate creating specialized centers for other infectious diseases in the country.

Thus, further investigation is required to understand what might have informed respondents to make such recommendations. Perceived stigma or feeling embarrassed during the interaction with healthcare providers may equally contribute to the respondents’ view of establishing specialized centers. This is plausible given that all visiting patients would be there for the same purpose and healthcare workers would be specifically trained for disease management. Nevertheless, because having specialized centers will not in any way alter the community’s perception of the disease, approaches such as education and awareness remain the most feasible and effective approach to addressing the issue of stigma.³¹ These recommendations align with the findings of Suliman et al.,³¹ who investigated the determinants of early treatment obstruction among TB patients in Malaysia. The researchers disclosed that long waiting times and short-course centers increased the odds of early treatment interruption in newly diagnosed patients. Experiencing long waits remains a burden for patients as they had to take frequent medical leave from their jobs and lost income needed for living expenses, thereby affecting the treatment plan. In addition, longer waiting times diminish patients’ satisfaction with services rendered by health systems, leading to a high dropout rate from treatment.³¹

Similar events apply to delayed presentation given that factors such as inaccessibility and handling of all stages of TB cases under the same setting will result in long waiting times and diagnosis delays. In terms of the operation and organization of healthcare facilities and centers, participants also mentioned areas requiring improvements, such as the working environment, infrastructure, and operational management. Notably, the participants noted that the interplay of these factors would make them feel comfortable in seeking treatment at public TB centers. Hence, the suggestions might be considered by policymakers and healthcare providers to encourage patients to engage in the early presentation of suspected TB cases.

CONCLUSION

This study revealed that patient- and healthcare-related factors, health-seeking behavior, socioeconomic status, and knowledge of TB were pertinent events that may shape the barriers and facilitators of ensuring prompt presentation and diagnosis of TB patients in Selangor. Specifically, problems such as financial constraints, inaccessibility and long distance to healthcare facilities, poor knowledge of TB, and lack of family and social support contributed to delayed TB presentation and diagnosis. Meanwhile, the role of perceived stigma in shaping patients’ decisions and behavior toward diagnosis and treatment requires further investigation. Apart from addressing the aforementioned issues, additional suggested interventions included establishing specific clinics and proximity of health facilities to facilitate a prompt response, increasing the capacity to isolate infected persons, and providing adequate treatment. These findings may be considered in the development of effective, locally tailored interventions to address delayed presentation and diagnosis of TB patients in Selangor.

Given the present research limitations, a longitudinal and prospective study could be attempted in future research to better understand the sequence of events leading to delayed presentation among TB patients. Apart from that, interventions to prevent patient and hospital delays could also be developed based on the present findings and reports in the previous literature. Qualitative studies such as interviews or FGDs need to be undertaken with a greater number of healthcare practitioners, particularly specialists and those working in TB centers and healthcare facilities receiving a high volume of TB patients. This is highly recommended, as the research instrument used in this study focused more on patient delay than on hospital and treatment delay. Future research may be expanded to other states with a high TB burden in Malaysia.