S T U D Y R E P O R T Reducing TB Delays: Evaluating the Frequency and Causes of Delays in Bangladesh and Swaziland JULY 2012 This study was produced by TB CARE II-University Research Co, LLC (URC) for review by the United States Agency for International Development (USAID) and was authored by Maria Insua; Samson Haumba; Fatema Zannat; Refiloe Matji and Alisha Smith-Arthur. This study was made possible by the support of the American people through the United States Agency for International Development (USAID). TB CARE II, is funded by United States Agency for International Development (USAID) under Cooperative Agreement Number AID-OAA-A-10-00021. The project team includes prime recipient, University Research Co., LLC (URC), and sub-recipient organizations Jhpiego, Partners in Health, Project HOPE along with the Canadian Lung Association; Clinical and Laboratory Standards Institute; Dartmouth Medical School: The Section of Infectious Disease and International Health; Euro Health Group; and The New Jersey Medical School Global Tuberculosis Institute. S T U D Y R E P O R T Reducing TB Delays: Evaluating the Frequency and Causes of Delays in Bangladesh and Swaziland JULY 2012 Maria Insua. University Research Co, LLC, USA Samson Haumba. University Research Co, LLC, Swaziland Fatema Zannat. University Research Co, LLC, Bangladesh Refiloe Matji. University Research Co, LLC, South Africa Alisha Smith-Arthur. University Research Co, LLC, USA DISCLAIMER The views expressed in this publication do not necessarily reflect the views of the United States Agency for International Development or the United States Government. Acknowledgements: The authors thank the United States Agency for International Development (USAID) TB CARE II Project for funding this assessment and giving URC the opportunity to implement it. The authors appreciate the important contributions of many individuals to the assessment, design, implementation, and/or report preparations, including by the National Tuberculosis Program staff in Swaziland including Mr. Themba Dlamini, Mr. Sandile Ginindza, Ms. Sibongile Mndzebele, Mr. Thabo Hlope that were instrumental in the design and support of the assessment conducted in health facilities in Swaziland. Special thanks to the URC’s field personnel in Swaziland. We thank Mrs. Lindiwe L.P. Mkhatshwa and Mrs. Janet Ongole who worked tirelessly to support the data collection and analysis of the assessments conducted. In Bangladesh we are grateful for the support of the NTP MBDC director, Dr. Md. Ashaque Husain who provided leadership and facilitated the study activities conducted in the districts. Special thanks to our colleagues from WHO and the civil surgeons at the district level, and Upazilla Health and Family Planning officers (UHFPO) at the sub-district level who volunteered their time and expertise to provide valuable input on the TB delay assessment. Also special thanks to the URC personnel who become deeply involved in the training of data collectors, ensuring quality of the data collected and ongoing support to the study activities. Special mention to Dr. Paul Daru for his unconditional support during the length of the study. We also extend our gratitude to the URC headquarters team Dr Neeraj Kak, Silvia Holschneider, Nina Blustein who provided clear guidance, innumerable reviews and extensive support during the study length. Recommended Citation: Insua M, Haumba S, Zannat F, Matji R, Smith-Arthur A. 2012. Reducing TB Delays: Evaluating the Frequency and Causes of Delays .Technical Report. Published by the USAID TB CARE II Project. Table of Contents Executive Summary ......................................................................................................................................................1 Introduction ...................................................................................................................................................................2 Background ...................................................................................................................................................................3 Framework for analysis ..............................................................................................................................................3 Findings from the literature review .............................................................................................................................4 Patient awareness delay ............................................................................................................................................5 Patient access delay ..................................................................................................................................................6 Health system delays .................................................................................................................................................7 Study Design, Protocol, and Tools to Assess TB Delay ...........................................................................................9 Study aim and objectives ...........................................................................................................................................9 Tools for fact-finding visits .........................................................................................................................................9 Methodology ..............................................................................................................................................................9 Data analysis ............................................................................................................................................................11 Study limitations .......................................................................................................................................................11 Study Results from Bangladesh and Swaziland .....................................................................................................13 Total delay ................................................................................................................................................................13 Patient delay ............................................................................................................................................................13 Diagnostic delay (health system delay) ...................................................................................................................13 Treatment delay (health system delay) ....................................................................................................................13 Causes of patient delay ...........................................................................................................................................14 Symptoms recognition ........................................................................................................................................14 TB knowledge .....................................................................................................................................................14 Perception of TB infection ...................................................................................................................................15 Stigma and discrimination ..................................................................................................................................15 Access and transportation ..................................................................................................................................16 Health-seeking behavior .....................................................................................................................................17 Patient’s satisfaction ...........................................................................................................................................18 Causes of diagnostic delay .....................................................................................................................................18 Provider diagnostic capacity ..............................................................................................................................18 Referral ...............................................................................................................................................................20 Delay in receiving lab results ..............................................................................................................................21 Causes of treatment delay .......................................................................................................................................21 TB health system delay (Swaziland health system audit) ........................................................................................22 Interventions carried out by the countries to reduce TB delays ..............................................................................22 Discussion of Findings and Recommendations .....................................................................................................24 Main findings............................................................................................................................................................24 General recommendations to address TB patient delay .........................................................................................25 Bibliography ................................................................................................................................................................27 Annex 1: Bangladesh: Gaps and Recommendations to Reduce TB Patient Delay ............................................28 Annex 2: Swaziland: Gaps and Recommendations to Reduce TB Patient Delay ...............................................31 Acronym List ACSM Advocacy, communication and social mobilization AFB Acid-fast bacillus ARV Antiretroviral therapy DOTS Directly Observed Treatment Short course DST Drug susceptibility testing EPTB Extrapulmonary Tuberculosis GFATM Global Fund to Fight AIDS, Tuberculosis and Malaria HCW Health care worker HIV Human immunodeficiency virus MDR-TB Multi-drug resistant tuberculosis MOH Ministry of Health NGO Nongovernmental organization NTP National TB Control Program SD Standard deviation SS Sputum smear TB Tuberculosis UHC Upazila health complex URC University Research Co., LLC USAID United States Agency for International Development WB World Bank WHO World Health Organization iv TB CARE II Executive Summary An effective tuberculosis (TB) control program The study found in both countries that patient- requires early diagnosis and immediate caused TB delay was two to three times greater initiation into treatment to reduce transmission. than the health system-caused delay. The main The implementation of the World Health Organization factor contributing to patient delay was patients’ (WHO) Direct Observed Treatment-Short course unawareness of the severity of the symptoms due (DOTS) strategy has contributed to significant gains, to 1) not having well-defined symptoms at the including achievement of an overall 87% treatment presentation of the disease or 2) a lack of knowledge success rate among new cases of smear-positive of TB symptoms (which were often attributed to other TB and identification of 65% of the estimated global diseases). Other factors that caused delay were number of incident cases. More efforts are needed, specific to the country context, such as the distance to however, to rapidly identify the remaining TB cases the facility and the cost associated with transportation, to reduce TB transmission and lessen the impact on fear of being diagnosed with TB, and the stigma communities. Estimates suggest that an untreated that might follow such diagnosis. The last played a smear-positive patient can infect, on average, 10 major role in Swaziland, which has a high TB/HIV contacts annually (1). Delay in TB diagnosis leads co-infection rate. Patients’ preferences for the provider to a more advanced disease state at presentation, they initially sought care from also affected the number with poor response to treatment allowing more of days it took to receive a TB diagnosis. In terms of transmission. For these reasons, understanding and health system delays in Bangladesh, TB diagnosis identifying the causes of delays in diagnosis and was provided in six days in government facilities and treatment initiation are critical to strengthening TB in 42 days if the patient first went to a private provider. control programs. Patients reported being satisfied with services in government facilities – 80% of patients in Bangladesh Passive case finding approaches, prevalent in many and 90% in Swaziland. TB programs, perpetuate delays by failing both 1) to ensure that the health system systematically Based on study results, we provide a set of general brings in TB suspects and 2) to engage people recommendations (country specific included in the in understanding their TB risk. Most-vulnerable annexes) for TB program managers and health service populations for TB are frequently omitted from main providers to support efforts to reduce the factors TB programs, as they don’t seek care from quality influencing patient delays in accessing TB services. providers and disproportionally experience a delay in receiving TB diagnosis/ treatment. As countries have moved toward designing interventions to close these gaps, a significant portion of the research has focused on issues within the organization of health services that cause delays once a patient seeks care. These issues include weaknesses in diagnostic networks and lack of coordination and referrals between TB services and other health programs. While such research is critical, a better understanding is also needed of why patients fail to promptly recognize their symptoms as possibly TB-related and seek appropriate care. To that end, TB CARE II conducted a study, reported here, in two TB high-burden countries, Bangladesh and Swaziland, to identify, measure, and explain the causes of patient delays in obtaining a TB diagnosis. Technical Brief | Reducing TB Delays 1 Introduction The World Health Organization’s (WHO’s) Direct Understanding the causes that contribute to patients’ Observed Therapy-Short course (DOTS) delays in TB diagnosis and treatment initiation is strategy, provides a critical framework for critical to strengthening TB control programs. At the increasing TB treatment success and emphasizes same time, it is important to recognize that delays passive case finding. In such case, patients may delay occurring in the health service delivery system (i.e., in seeking care for their symptoms increasing TB related to weakness in diagnostic networks, lack of transmission in the community. coordination and referrals between services, and others) also play a significant role in delaying TB Most TB transmissions occur between the appearance diagnoses and treatment. These delays deserve of coughing and a few weeks after the initiation of critical attention; however, this report focuses primarily treatment. Estimates suggest that an untreated, smear- on the under-scrutinized factors that contribute to positive patient can infect, on average, 10 contacts patient-related delays. annually and more than 20 during the course of the disease (1). A delay in TB diagnosis may lead to a more advanced disease state at presentation, with an increased bacillary load. Late-stage presentation may contribute to a poor response to treatment, resulting in more severe morbidity while increasing the risk of transmission. It is important to identify the causes of such delays to efficiently take steps to make TB control programs more effective (3). Active case finding shifts the emphasis to empower front-line health care workers, patients, and communities to be more assertive in recognizing TB symptoms and seeking appropriate care and treatment. Recent studies from high-burden TB countries demonstrate that improving case finding may save 10 times as many lives as DOTS alone (4). We conducted a literature review to evidence what the research community has found as the main causes of patients delaying seeking care for their TB symptoms and found great variability regarding the methodology used to define and measure TB delays. To unify the different criteria we designed a framework for evaluating delays in TB diagnosis and treatment. We also followed the same framework for the discussion of the study’s findings and to provide recommendations for reducing TB delays. 2 TB CARE II Background The TB CARE II Project is a global TB control Figure 1. Literature Research Criteria project designed to provide technical guidance to TB programs in high-burden countries to help them address barriers to building effective TB control systems. In 2011, TB CARE II, which is funded by the Medline and Cochrane U.S. Agency for International Development (USAID) libraries, WHO, WB and and led by University Research Co., LLC (URC), began working with National TB Control Programs other organizations (NTPs) in South Asia (Bangladesh) and sub-Saharan Africa (Swaziland) to develop methods to evaluate the frequency and causes of delays in TB diagnosis. The work was organized around the following steps: Southern Africa Search criteria I. Review existing knowledge; and and key words • Develop a framework for analysis, and South East Asia • Conduct a desk review of current studies on factors influencing patients’ delays in TB diagnosis and treatment; II. Develop the assessment methodology, including a set of tools to collect data on TB patient delays Framework for analysis from the perspective of those patients, DOTS community leaders, health providers, and TB Various frameworks have been used to analyze factors district managers; that cause TB delays, and these frameworks define and measure delay differently. Some studies consider III. Conduct field assessments in two high-burden TB the total TB delay as a measure of the time elapsed countries, Bangladesh and Swaziland, to identify from the time the patient presents with TB symptoms specific factors causing delay; to the initiation of TB treatment. Others disaggregate IV. Develop recommendations for TB program this measure into two phases: “patient delay” (i.e., managers to reduce TB patient delays based on the time from the onset of symptoms until the patient country study findings. seeks care), and “health system delay,” (i.e., the time from when the patient approaches the health system Our literature review (Figure 1) was conducted in until he/she is diagnosed and put on treatment). databases from PubMed, the National Center for Biotechnology Information, Cochrane, WHO, the World Other studies distinguish between the types of health Bank, and others. We used the following search terms services patients initially seek to set a cutoff between to identify relevant articles: “TB patient delay,” “TB patient and health system delays(6)(10). For example, diagnosis delay,” “Time delay to TB treatment,” “TB one can consider a health system delay as starting perception,” “TB stigma,” “lay population TB treatment as soon as a patient contacts any type of health preferences,” “gender perspective for TB access,” “TB service, whether formal or informal. Alternatively, one and poverty,” and “TB awareness.” can restrict the definition of a health system delay as starting when the first contact is made with a formal The review focused on relevant articles from two health service provider. Additionally, some studies geographical areas, Southern Africa and Southeast Asia. present results of delays as mean values (6), while others use median values (12-14) (25) to reduce the impact caused by outliers, i.e., patients with extensive delays, which may be several years or more. Technical Brief | Reducing TB Delays 3 For this study, we adopted the following definitions of The disagreement in definitions used to calculate TB delays: delays makes comparisons and evaluations of improvements difficult. After the literature review we • TB total delay is the time between the onset of TB designed a framework for analysis (Figure 2) that symptoms and the patient’s receiving appropriate includes those factors shown in research studies as TB treatment. playing a contributing role in increasing TB patients’ • TB patient delay is the time between the onset of delays in recognizing their symptoms and accessing symptoms and the first contact with any health care health care. service (formal or informal). Patient delay has two phases: 1) awareness delay is the time between the Findings from the literature review onset of the symptoms and the recognition of those symptoms as a disease that needs health care, In general, the reviewed studies lacked consensus and 2) access delay is the time from symptoms regarding the relative importance of different factors’ recognition to the first contact with a health care contributing to patient delays. A review by Storla system(formal or informal). et al. (6) of 58 studies and conducted worldwide • TB health system delay is the time between the first concluded that countries varied greatly in terms of care-seeking behavior and receiving TB treatment. causes of delays, and no pattern emerged for TB It also has two phases: 1) diagnostic delay is the delays in different world regions. Even several studies interval between a patient’s arriving at any type of conducted in a single country provided different provider (public, private, traditional healers) and the results regarding the causes of TB delay, perhaps patient’s receiving a TB diagnosis, and 2) treatment due in part to the overall lack of consistency among delay is the interval between TB diagnosis and researchers in defining the measurement intervals. initiation of anti-TB drugs (5). Some studies presented the results of delays in Figure 2. Framework for evaluating delays in TB diagnosis and treatment TOTAL DELAY PATIENT DELAY HEALTH SYSTEM DELAY Awareness Access Diagnostic Treatment Delay Delay Delay Delay Passive Symptoms Health Care Diagnosis Treatment Case Finding Recognized Utilization Demographic Distance, transportation Literacy/TB awareness Economic/costs Focus of Study Symptom recognition Health seeking behavior Poverty Stigma/discrimination Attitude Perception of services TB HIV-TB Case Finding SURVEILLANCE Active MDR-TB Case Finding • Contact investigation: household, workplace, community • Clinical risk groups: malnourished, smokers, Diabetes, Mellitus HIV, previous TB • Risk populations: prisons, urban slums, migrants, elderly 4 TB CARE II