Ega Janse van Rensburg Michelle Engelbrecht Francois Steyn Dingie van Rensburg David McCoy Carmen Báez

Transcription

1 Tuberculosis (TB) in Kopano Health District (Free State): A situation analysis Ega Janse van Rensburg Michelle Engelbrecht Francois Steyn Dingie van Rensburg David McCoy Carmen Báez Jointly compile d by: Centre for Health Systems Research and Development Health Systems Trust - Initiative for Sub-District Support

2 TUBERCULOSIS (TB) IN THE KOPANO HEALTH DISTRICT (FREE STATE): A SITUATION ANALYSIS Ega Janse van Rensburg Michelle Engelbrecht Francois Steyn Dingie van Rensburg David McCoy Carmen Báez 2000 Centre for Health Systems Research & Development and Initiative for Sub-district Support Jointly compiled by: Centre for Health Systems Research & Development University of the Orange Free State P.O. Box 339 BLOEMFONTEIN 9300 SOUTH AFRICA Health Systems Trust Initiative for Sub-district Support 401 Maritime House Salmon Grove DURBAN 4001 SOUTH AFRICA Acknowledgements The financial support of the Initiative for Sub-district Support in the Tshepano health region is thankfully acknowledged. Contributions by the following people during the process of the field work are also recognised with appreciation: Ms Leonore van der Bank; Ms Monica Norman; Mr Eric Mojake; and all respondents in the empirical survey, who include nursing personnel in Kopano clinics and CHCs; community based volunteer DOTS supporters in Meloding and Allanridge; TB patients; the regional pharmacist; the laboratory technician at the Goldfields Hospital; the division of Occupational Health at the Harmony mine, as well as the general practitioners from Welkom and Meloding. i

3 EXECUTIVE SUMMARY Background: The Kopano health district has the highest (TB) incidence rate in the Free State (555 per ). Health care managers and providers there have identified TB as one of the priority health problem areas in the district. The Initiative for Sub-district Support (ISDS) approached the Centre for Health Systems Research & Development to assist in conducting a situation analysis regarding the control of TB in Kopano. The research was conducted in November/December Methodology: A cross-sectional once-off, assessment was conducted in the Kopano Health District to rapidly assess the situation regarding TB control and management. Data was obtained from primary and secondary sources. In addition to looking at district-wide data, four primary level facilities were purposively sampled for more detailed research. Interviews were conducted with TB managers, health care workers providing TB services, a pharmacist, a laboratory technician, DOTS supporters and TB patients. Key findings: A district TB coordinator oversees the provision of TB services in the district. Each PHC facility has a TB coordinator. In some clinics this role and function is rotated from one staff member to another. There is an indication that this happens because nurses are reluctant to get involved with TB management. TB data appears to be lacking in complete reliability and accuracy. Furthermore, some nurses are inadequately informed about the correct use of the TB register. The high proportion of re-treatment patients reflects the general failure of the TB programme to cure patients. This corresponds to the fact that a significant number of patients are not on a DOTS system. A proportion of re-treatment cases did not have sputum culture tests done, despite the fact that these are the patients who are at higher than average risk of having drug resistant bacilli. There appears to be some confusion and misunderstanding about the value and purpose of the different diagnostic procedures for TB. Varying practices apply to active case finding and prophylactic treatment. No clear policy exists with regard to testing and counselling TB patients for HIV. In search of solutions: Each clinic nurse who is committed to and interested in TB management needs to be identified and developed to be an efficient local TB coordinator. Basic day-to-day management of TB patients must become the shared responsibility of all clinic staff. Health facility staff need to receive continued training and encouragement to provide effective health promotion, TB education, use TB registers properly, and to use correct diagnostic procedures. With regard to TB record keeping, a thorough audit of all TB data collection needs to be done so that the system can be rationalised and simplified. The DOTS system needs to be thoroughly assessed in terms of its strengths and weaknesses. GPs need to come to a shared agreement with public services about a clinical policy for TB diagnosis. Clear guidelines must be established for case-finding and prophylactic treatment. It is important that MDR TB patients are appropriately detected and managed. The district needs to develop an appropriate policy on voluntary testing and counselling for TB patients with HIV. ii

4 TABLE OF CONTENTS SECTION 1: INTRODUCTION The problem: TB Background to the research 1 SECTION 2: AIMS, OBJECTIVES AND METHODS Aim Objectives Methodology 2 Data sources 2 Sampling and study populations 2 SECTION 3: FINDINGS Background and overall organisation of the district TB programme TB incidence and general TB profile TB diagnosis 6 Sputum tests 6 The use of X-rays 8 Access to clinics for diagnosis 8 General understanding of diagnostic procedures 9 Getting results back to patients Case management 10 The DOTS system 10 Tracing defaulters 14 Patient counselling and health education 15 The management of very ill TB patients 15 Follow-up sputum tests 16 MDR patients 16 HIV/AIDS 16 The rural areas and mobile services Active case finding and prophylactic treatment Laboratory services Drug supply Record keeping, registration and notification of TB TB management in the private sector 21 Private GPs 21 TB management at a mine Treatment outcomes 22 SECTION 4: MAIN CONCLUSIONS AND RECOMMENDATIONS 24 General management and supervision 24 TB health information system 24 Treatment adherence and directly observed therapy 24 TB diagnosis 25 Case finding and prophylactic treatment 25 MDR TB 25 Link between clinics and hospitals 25 HIV 25 APPENDIX A APPENDIX B APPENDIX C iii

5 LIST OF FIGURES Figure 1: Age distribution of new, smear positive Pulmonary TB cases, Figure 2: Type of TB in Kopano, Figure 3: New and re-treatment TB cases in Kopano, Figure 4: Bacteriological testing of PTB cases 7 LIST OF TABLES Table 1: Clinics and Community Health Centres (CHCs) rendering TB services in Kopano 3 Table 2: New versus re-treatment TB cases 6 Table 3: Pre-treatment bacteriological testing of PTB cases 7 Table 4: Pre-treatment bacteriological testing of re-treatment PTB cases 8 Table 5: Information from telephonic interviews with TB coordinators at clinics in Kopano 13 Table 6: Number of TB tests done by Goldfields SAIMR for a one year period 19 Table 7: Turnaround times for the different TB tests indicated by the laboratory 19 Table 8: Turnaround times for the different TB tests encountered at clinics 19 Table 9: Treatment outcomes for patients diagnosed during Table 10: Comparison of treatment outcome indicators between Kopano and the Free State (patients diagnosed in 1998) 23 iv

6 SECTION 1: INTRODUCTION 1.1 The problem: TB The control of Tuberculosis (TB) remains a major challenge in South Africa, despite the fact that effective TB drugs are available. The seriousness of the epidemic in this country was confirmed in June 1996, when World Health Organisation (WHO) experts stated that South Africa has one of the worst recorded TB epidemics in the world (Strides and Struggles in TB Control, : 1 & Van der Linde, 1996: 897). According to the WHO Global Tuberculosis Report (1999), South Africa was one of the 12 countries worldwide to have an estimated incidence rate of 250 TB cases per population in The estimated incidence rate for all cases in South Africa was 392. In 2000, the South African Medical Research Council s National Tuberculosis Research Programme estimated 600 TB cases per population, and new cases, of whom will be infectious and 46,7% will also be HIV positive. TB is the leading infectious killer of youths and adults in South Africa and it is estimated that it kills nearly people every month. It is further estimated that 18% of TB patients in this country interrupt their treatment which means that these people are exposing the communities in which they live to the disease (South African Health Review, 1997: 197 & Strides and Struggles in TB Control, : 1). The TB problem in South Africa is largely a result of historical neglect and poor management systems, compounded by the legacy of fragmented health services. A lack of standardised control programme procedures and insufficient focus on crucial aspects such as case holding, have resulted in high treatment failure and interruption rates. A comprehensive national TB strategy, based on the Framework for Effective TB Control proposed by the World Health Organisation was launched in Guidelines (South African Tuberculosis Control Programme Practical Guidelines) for the implementation of the national strategy have since been developed (Weyer, 1997: & The South African Tuberculosis Control Programme Practical Guidelines, 1996: ii-iii), using the Directly Observed Treatment Short-course (DOTS) strategy as the basis of the Programme Background to the research The Free State has the third highest TB incidence rate in the country (334 per 100,000), with the Kopano health district displaying the highest TB incidence rate in the province (555 per 100,000) a. Health care management and personnel operating in the Kopano district have identified TB as a priority, and in 1999 the Health Systems Trust approached the Centre for Health Systems Research & Development to assist in conducting a situation analysis regarding the control of TB in Kopano. Fieldwork was conducted during late November and early December DOTS is a patient-centred strategy to ensure the completion of treatment under direct supervision. It uses a DOTS supporter to observe treatment as well as help motivate and empower patients and their families to comply with full treatment. 1

7 SECTION 2: AIMS, OBJECTIVES AND METHODS 2.1 Aim To rapidly assess the situation regarding the control and management of TB in the Kopano health district. 2.2 Objectives Compile the basic key TB programme indicators for the health district Describe the human resources working with TB at the selected sites Describe how TB is diagnosed and treated in the public health sector Describe the case management of TB patients Describe the referral system for TB patients Describe the DOTS system in operation Describe the support systems to the TB programme: record keeping, laboratory services and pharmaceutical supplies Describe the role played by the private sector in the management of TB patients 2.3 Methodology This study was done to obtain a cross-sectional once-off assessment of the situation regarding TB in the Kopano health district and is largely descriptive. It was also an attempt to develop a methodology for rapid situation analysis that will be used in further districts of the Free State to measure the TB situation there. Data Sources Data was obtained from: Secondary data from Department of Health reports, journal articles, as well as academic and NGO publications Primary data from field observations, interviews with a range of role players and the TB register Interviewees included: Communicable disease coordinator of the Free State (1) Communicable disease coordinator of the Kopano district (1) Nurses based at fixed and mobile clinics who are involved in TB management (6) Community based volunteer DOTS supporters (9) Clinic TB coordinators (4 personal interviews and 23 telephone interviews) Regional pharmacist (1) Laboratory technician in charge of TB (1) Patients with TB (7) General practitioners (GP s) (3) Sampling and study populations In addition to looking at district-wide data, four primary level facilities were purposively sampled for more detailed research: Kopano Community Health Centre (CHC) in Welkom Khotaleng Clinic in Meloding, Virginia The Local Authority clinic in Allanridge A mobile team working in the rural areas around Welkom 2

8 SECTION 3: FINDINGS 3.1 Background and overall organisation of the district TB programme The Kopano health district is part of the former Health Region C of the Free State and includes the following major towns Welkom, Virginia, Winburg, Allanridge, Hennenman, Odendaalsrus, Theunissen and their surrounding rural areas (see Appendix A). It has an estimated population of 505,608 (Central Statistical Service: 1996). TB services are rendered in the public health system through 36 clinics and two community health centres (CHCs). Some of the clinics are run by local authorities, and others by the Free State Department of Health (Table 1). Table 1: Clinics and Community Health Centres (CHCs) rendering TB services in Kopano Town PHC facility Town PHC facility Welkom Local Authority Clinic Allanridge Local Authority Clinic Bophelong Clinic Bophelong Clinic Bronville Clinic Leratong Clinic Khotsong Clinic Tshepong Clinic Hennenman Local Authority Clinic Thabong Clinic Phomolong Clinic Riebeeckstad Clinic Phomolong Mobile Clinic Kopano CHC* Mobile Clinic Mobile Clinic Odendaalsrus A. M. Kruger Clinic Virginia Local Authority Clinic Boithusong Clinic Meloding Clinic Bophelong Clinic Khotalang Clinic Phedisanang Clinic Saaiplaas Clinic Mobile Clinic 1 Mobile Clinic Mobile Clinic 2 Winburg Local Authority Clinic Theunissen Local Authority Clinic Khamohelo Clinic Masilo Clinic Mobile Clinic Lusaka Clinic Mobile Clinic 1 Ventersburg Ventersburg CHC* Mobile Clinic 2 Mmamahabane Clinic Mobile Clinic Three district hospitals (Odendaalsrus, Virginia and Winburg), as well as the Goldfields Regional Hospital in Welkom also render TB services. The Odendaalsrus Hospital has 17 beds available for TB patients, Virginia Hospital has ten beds and Winburg Hospital has approximately five beds (excludes beds for children). This district used to have a TB hospital at Allanridge but it was closed down early in TB patients who need specialised hospital care are now referred to the SANTA TB Hospital in Thaba Nchu. The district has nine permanent district medical officers and a larger number of private GPs, 23 of whom work on a sessional basis in the public sector. In terms of the key support services, nearly all the clinics use the SAIMR laboratory services for sputum tests at the Goldfields hospital, with the exception of the Theunissen and Winburg clinics, who use the SAIMR laboratory in Bloemfontein. Culture and sensitivity tests are done in Bloemfontein for all the clinics. TB medication is supplied to all services by the regional dispensary in Welkom. The TB programme in Kopano is supervised and coordinated by a district TB coordinator, a professional nurse who was allocated to the job. She is expected to oversee the district TB programme as well as co-ordinate training of staff on TB. She reports to the Deputy Director: Communicable Diseases of the province as well as the Assistant Director: Primary Health 3

9 Care for the Kopano district. Most clinics have identified a nurse to be responsible for TB management and co-ordination as well as training and supporting other personnel in the clinics. Some clinics, however, rotate the responsibility for TB management. Key Issues: Background and overall organisation of the district TB programme The Kopano health district is large in terms of the number of clinics and CHCs. One district TB coordinator is expected to oversee the provision of TB services in 38 primary level facilities. The extent to which this one person is able to adequately know, monitor, supervise and support each of those facilities needs to be reviewed, especially in light of the fact that none of the clinics have a generic PHC supervisor. It is positive to note that each primary level facility has a person identified as the official clinic or CHC TB co-ordinator. This should make the district TB coordinator s job a little easier. However, it is worrying to note that in some instances there is a reluctance amongst nurses to work on TB, and that in some clinics, the role of clinic TB coordinator is rotated amongst staff as this may lead to a lack of continuity. 3.2 TB Incidence and general TB profile (gender distribution / age distribution / type of TB and ratio of new: re-treatment cases) During 1998 and 1999 respectively, 6,164 and 3,425 TB cases were registered in the district, including patients transferred into the area 2. If the transferred-in patients are excluded from these figures, the incidence of TB cases works out at 4,274 cases in 1998 and 2,368 cases in The steep decline in TB cases from 1998 to 1999 in Kopano is mainly due to the mine hospitals not submitting their TB statistics to the Kopano District TB Coordinator during Based on a district population of (Central Statistical Service: 1996 census data) and based on the 1998 figures (which includes the statistics from the mine hospitals), the TB incidence rate can be estimated to be approximately / 100,000. During ,705 TB cases were registered in the Free State, and Kopano carried 26.5% of this TB caseload. A breakdown of the district TB statistics per town and per facility according to the official provincial statistics is given in Appendix B. The number of new, smear positive Pulmonary TB (PTB) cases is an accurate measure of the TB epidemic, and Figure 1 shows the age and gender distribution of new, smear positive PTB cases in Kopano. It shows a slightly odd picture of the female incidence being two to three times higher than the male incidence for the younger age groups, and the reverse of this for the older age groups. One possible explanation for this is that this reflects the general demographic composition of Kopano, although there should be no reason why there should be twice as many females with TB in the 0-14 year age group. 2 In order to avoid double registration, patients who move from one clinic (where they are registered) to another, are categorised as transferred into the area. This means that these patients will not be included more than once in the statistics for the area. 4

10 Figure 1: Age distribution of new, smear positive Pulmonary TB cases, Males Females Males Females In terms of the type of TB diagnosed and registered in the district, Figure 2 shows the relative proportion of PTB cases to primary TB and non-pulmonary TB cases, referred to as other TB. It is difficult to know if the number of extra-pulmonary cases of TB that are being diagnosed is what should be expected. Generally speaking, one would expect to diagnose one case of extra-pulmonary TB for every 12 cases of PTB. However, the proportion of extra-pulmonary TB should rise as the prevalence of HIV increases in a community. Figure 2: Type of TB in Kopano, ,2% 6,9% 6,2% 9,7% 82,9% 84,1% Pulmonary TB Primary TB "Other" TB Another important general picture of the TB profile in Kopano is the relative proportion of TB cases that are new, and those that are re-treatment cases. The official statistics for the PTB cases are shown in Table 2. The findings show that a very high proportion of TB cases seen in Kopano are patients who have previously defaulted on their treatment, or failed to be previously cured. 5

11 Table 2: New versus re-treatment PTB cases Results New cases Re-treat. cases Total New cases Re-treat. cases Total N % N % N N % N % N Total Figure 3: New and re-treatment TB cases in Kopano, ,6% 28,4% New cases Re-treatment cases 74,4% 71,6% Key issues: TB Incidence and general TB profile According to the official statistics, the Kopano health district has an extraordinarily high number of TB cases relative to the rest of the province (a quarter of the entire province s caseload). The incidence rate of is also very high relative to It may be useful to understand the underlying reasons for this. The high proportion of re-treatment cases is cause for extreme concern as it reflects a general failure of the TB programme to cure patients. The gender distribution of PTB cases is an odd picture which needs to be explained. The private sector statistics need to be standardised and supplied to the District TB coordinator. PTB occurs in eight out of ten patients diagnosed with TB, while one out of ten TB patients is diagnosed with primary TB or other TB. 3.3 TB diagnosis Sputum tests A key element of an effective district TB programme is the ability of the district to adequately investigate all suspected cases of TB, and to then be able to accurately diagnose them. The vast majority of TB cases are PTB cases. Most of these cases should be smear positive, although more and more will become smear negative as the prevalence of HIV rises. Nonetheless, all patients suspected of having PTB should have a sputum test conducted, resulting in a bacteriological coverage rate 3 of 90%. Generally speaking, a patient suspected of having PTB is asked to produce two sputum samples either taken on separate consecutive days, or several days apart. 3 Bacteriological coverage is the percentage of all registered Pulmonary TB patients on whom bacteriological investigation was conducted. 6

12 The pre-treatment bacteriological investigation of suspected PTB cases for both new cases and re-treatment cases is shown in Table 3. As many as 15.6% of PTB cases in 1999 were diagnosed without a sputum smear test having been done. The bacteriological coverage in Kopano in 1999 (84.4%) was similar to the Free State average (84.6%) for the same time period. Within Kopano, below average bacteriological coverage was found at the Allanridge Hospital (20,2%), Kopano Clinic in Welkom (76,5%), Odendaalsrus (80,2%) and Winburg (73,8%). Table 3: Pre-treatment bacteriological testing of PTB cases N % N % Smear , ,4 Smear , ,4 Smear-, culture , ,7 Smear-, culture ,2 79 4,0 No bact , ,6 Total In addition to the PTB cases with no bacteriological examination, there were a number of cases who were diagnosed with PTB despite being smear negative, and even despite being smear negative and culture negative. Altogether therefore, 28% of PTB cases registered in 1999 were diagnosed without a positive smear or a positive culture. Figure 4: Bacteriological coverage in Kopano and the Free State, Bacteriological tests conducted Bacteriologocal tests not conducted Kopano (1998) Free State (1998) Kopano (1999) Free State (1999) Table 4 shows the bacteriological testing that was done only on the re-treatment cases. What this shows is that slightly more than 15% (1998=17,5%, 1999=15,9%) of re-treatment cases were not tested bacteriologically. 7

13 Table 4: Pre-treatment bacteriological testing of re-treatment PTB cases N % N % Smear- 72 7,9 48 8,5 Smear , ,2 Smear-, culture , ,3 Smear-, culture- 54 5,9 23 4,1 No bact , ,9 Total There does not appear to be any problems for the clinics to get access to culture tests, or for getting the results back. When asked to list the indications for doing a culture test, there was broad agreement that the indications are: - in re-treatment cases (Clinics A, B, and C) - if one of the sputum tests is negative and the other is positive - when a high index of suspicion remains despite both sputum tests being negative - when the patient is still positive after two or three months of treatment However, as can be seen from Table 4, a high proportion of patients officially categorised as re-treatment cases do not have culture tests done. The use of X-rays According to policy, X-rays should be seldom used for the diagnosis of PTB, due to the fact that many other lung diseases can present like TB. However, as mentioned earlier, a high proportion of PTB cases have neither had a positive sputum smear test nor a positive sputum culture test. This is partly due to a sizeable number of TB patients being diagnosed through X-rays only. The Clinic A TB coordinator indicated that about 10% of all TB patients were diagnosed by means of X-rays only. A large proportion of these are patients who had X-rays taken or ordered by the local GPs, either in their private capacity or when they are contracted to provide sessions at public facilities. When GPs diagnose TB by means of an X-ray and then send the patient to the clinic for treatment, clinic nurses are unsure if they should confirm the GP s diagnosis microbiologically, whether they should simply start treatment, or whether they should do both. In Clinics A and B, the professional nurses have the authority to request X-rays when sputum cannot be obtained, but a medical practitioner still interprets the X-rays and makes the final diagnosis. Access to clinics for diagnosis In some of the sampled clinics, it was apparent that access for TB diagnosis was not optimised. For example, although Clinic A offers a 24 hour health service, TB diagnoses are not done after hours. If a professional nurse, other than the TB coordinator, suspects a patient of having TB in the evening, the patient is asked to come back the following day. 8

14 General understanding of diagnostic procedures Although a structured assessment of the nurses understanding of diagnostic procedures was not conducted, it was apparent there is some confusion about how and when a patient should be diagnosed with TB. One area of confusion appears to be what the nurse should do when one test comes back negative and the other is positive. Although in theory, both sputum tests have to be positive to make a diagnosis of TB, and a culture test is supposed to be done if one of the tests is negative. Nurses, however, queried the appropriateness of this when the patient has all the clinical signs and symptoms of PTB. In some cases clinic staff indicated that treatment is started before any results are received back if the person has obvious clinical symptoms and is very ill. Some nurses also indicated that they thought that culture tests and sputum tests were alternative diagnostic procedures, rather than diagnostic procedures that complemented each other. Another nurse indicated that she preferred culture tests because they are more accurate than sputum tests. Getting results back to patients TB is a diagnosis that often cannot be made immediately on the spot, unless there is somebody on the spot who can do sputum microscopy. Therefore it is up to the patient to return to the clinic to get his/her sputum test result back. It can therefore be expected that some patients will not return for their results. In some places it may be possible for the clinic to notify the patient by telephone about his/her result, but this would be in rare circumstances. At Clinic A, if the results are positive, the TB nurse visits the patient at his/her home and, if the patient is not very ill, he/she is asked to visit the clinic for treatment. Key issues: TB diagnosis 15.6% of PTB cases were diagnosed without a sputum smear test having been done. This equates to a bacteriological coverage rate of 86.4%, short of the desired 90%. 28% of PTB cases registered in 1999 were diagnosed without a positive smear or a positive culture this corresponds to the finding that are large number of patients are diagnosed on the basis of chest X-rays. It may be that many of these patients did in fact have PTB, but it is possible that some of them had an acute chest infection on top of chronically damaged lungs which can look like PTB on a chest X-ray. The GPs in the Kopano area need to be brought into a shared agreement with the public services about a clinical policy for TB diagnosis, so that nurses are not caught between what a GP has said and done on the one hand, and the provincial TB guidelines on the other hand. There is an unacceptably large proportion of re-treatment cases, reflecting a generally poor TB control programme. A proportion of re-treatment cases did not have sputum culture tests, despite the fact that these are patients who are at a higher than average risk of having drug resistant bacilli. In Clinic A, despite being open 24 hours a day, patients are sometimes told to come back the following day to have their sputum samples taken. Such a patient may not return to a clinic for weeks, and this constitutes a missed opportunity for the diagnosis of TB. Patients suspected of having PTB should have maximum access to sputum smear tests, and the district needs to conduct a thorough assessment of the practices in each clinic. 9

15 Key issues: TB diagnosis There appears to be some confusion and misunderstanding about the value and purpose of the different diagnostic procedures for TB sputum microscopy, sputum cultures, clinical signs and symptoms and X-rays. Nurses need to be given further inservice training about this, and there may be a need for the province and district to draw their own locally appropriate policies, based on the national guidelines. This rapid situation analysis did not find out the proportion of smear positive patients who did not return to the clinic for their results, nor did it find out the success of clinics in proactively tracing patients with smear positive results. This is an area of action research that the district TB coordinator may want to instigate in the future. 3.4 Case management The DOTS system The district communicable disease coordinator (CDC) explained that in general, it is impossible for clinic nurses to go out into the community every day to directly observe patients taking their TB medication. This is due to the workload in the clinics, as well as a lack of subsidised transport. At the same time, for a number of TB patients, it is impossible for them to attend a clinic every day to take treatment under direct supervision. Reasons for this could include that they are too ill, they may be at work during clinic hours or because they cannot afford daily transport to the clinic. Having TB patients come to a clinic ever day may also be undesirable because of the congestion that such patients can add to a clinic. Therefore there is no option but to have a community-based DOTS system. Clinic-based observation of therapy is, however, encouraged in certain circumstances: - Patients who work or live close to the clinic - Re-treatment patients who require thrice-a-week injections However, because of the lack of a community-based system of TB supporters, most PHC facilities continue to operate a clinic-based system for many other patients (see case studies below). A formal community-based DOTS programme is limited in Kopano district. At the end of 1999, the number of active formally trained community-based DOTS supporters was 36: ten in the three clinics in Virginia, ten in Kotlahong/Odendaalsrus, and sixteen in Allanridge. Although major successes are being reported in all three of these communities, several interviewees complained that the establishment of community based DOTS is hampered by the communities lack of interest and participation in TB management, due to the absence of any remuneration and because some DOTS supporters find it difficult to travel to clinics to obtain drug supplies. These and other considerations cause health care facilities to establish clinic instead of community based DOTS. In these three areas, the community-based DOTS supporters are supplied with TB medication on a weekly basis by the clinics, and then do home visits every day, taking medication to TB patients and directly observing that the medication is consumed. They are also trained to provide health education on TB. They generally report back every week to a clinic nurse who supervises and monitors them, and who also inspects the patient cards. If there is a problem with one of the patients, the supporter refers the patient back to the clinic. The volunteers are all from the local communities, and have been trained collaboratively by SANTA and the Department of Health, with some support from the Rotary Club. As an incentive and a token of appreciation for their work and status, some of the DOTS supporters are given bags in which to carry their supplies, as well as an identity badge. The quality of support and supervision provided by these community-based volunteers was not thoroughly assessed. However, it was possible to ascertain that although they did not 10

16 know the names of the different pills, they are able to go on the colour of the tablets and the number to be administered as indicated on the container. One community volunteer DOTS supporter also indicated that, after the patient has taken the TB medication, she makes conversation while observing the movement of the patient's mouth and determines in this way whether the tablets have actually been swallowed. Finally, it was mentioned that the policy of rotating staff to be in charge of TB control at some clinics for periods of time is detrimental to ensuring continuity of the DOTS programme. Part of the reason for this is that in some clinics there is a general unwillingness for anyone to volunteer as the TB coordinator, because of a perception and feeling that this is a difficult and burdensome programme for which to be responsible. Clinic A The clinic-based DOTS programme is managed by a professional nurse and a staff nurse. Patients on Regimen 1 attend every day for the first two months, and thereafter once a week to collect their medication. Patients on Regimen 2 attend on Mondays, Wednesdays and Fridays to receive their pills and injections for the first three months, after which they attend once a week to collect their pills. At any one time, the CHC has about 100 patients attending the clinic to receive their TB treatment. Although the TB coordinator indicated that they prefer TB patients to attend the clinic every day, if a patient is unable to do so, patients are asked to identify someone close to their home or workplace who might support them during their treatment. It was, however, noted that community members in the area are generally reluctant to become involved as community based DOTS supporters. After such a person is identified and has consented to the responsibility, the patient is asked to bring that person to the clinic in order to receive DOTS-supporter orientation. These supporters are then usually supplied with TB medication every week, in most cases via the patient who obtains it from the clinic weekly. Some of those DOTS supporters, who fetch the medication themselves, complain that the clinic is too far to travel to every week. When an employer is identified as a potential DOTS supporter, the Clinic A TB coordinator contacts the employer by telephone or letter and informs him/her about the situation. Although high success rates have been recorded in cases where employers act as DOTS supporters, it has happened in the past that TB patients have lost their jobs as a result of their TB positive status having been revealed. More than half the TB patients at Clinic A are supported by these community-based DOTS supporters. Approximately 20-30% of patients fetch the medication at the clinic themselves, and it is expected that a proportion of them end up treating themselves without supervision or direct observation. On average, a week s supply is provided to patients, but in some cases monthly supplies are provided. 11

17 Clinic B The majority of patients attend the clinic daily for their treatment under the supervision of a nurse. Re-treatment patients attend the clinic on Mondays, Wednesdays and Fridays. Those who are unable to attend the clinic daily, take their drug supply home or to an employer who acts as a DOTS supporter. Unlike Clinic A, there is a formal community-based volunteer DOTS programme for TB patients who are too ill or old to travel to the clinic every day. Clinic C Clinic-based DOTS was introduced in March Before that, a mobile TB team went to all the TB patients houses to deliver medication on a two-weekly basis. The PHC services in this area also have a mobile clinic vehicle with two nurses who work full time on TB management. The clinic-based DOTS system was implemented for school-based learners, patients who live near the clinic and for re-treatment cases who need injections. Patients who go away for a period of time are requested to take their TB treatment cards with them. If they go to a place near a clinic, they have to visit that clinic for their medication. If they go somewhere where there is no clinic, e.g. a farm, they are given their medication for the time they will be gone. Learners attend the clinic after school for their medication as the nurses found that most of them are embarrassed about their TB positive status and do not want other learners to know. For this reason, teachers are generally not assigned as community based DOTS supporters. In addition to the mobile TB service and the clinic-based DOTS system, there are 16 formally trained community volunteer DOTS supporters who work with all the clinics in the area. They were recruited by SANCO in collaboration with the TB coordinator, and then trained by SANTA over two days. New TB patients requiring home DOTS support are assigned to volunteer supporters during clinic meetings every Monday. The volunteers work in teams of two, to render them safer while working in the community, and each team is assigned between one and seven patients at a time. Clinic D This area has another formal community-based DOTS supporter programme supported by SANTA. Here, the catchment area is divided into ten parts, each of which is covered by a DOTS supporter who operates Mondays to Friday. The coordinator of the programme matches the DOTS supporter to a patient according to geographic proximity, but no more than five patients are assigned to one DOTS supporter at any one time. Monthly meetings are held between the DOTS supporters, the TB nurse and SANTA officials during which problems are discussed. Generally speaking, no problems with the community volunteer DOTS system have been experienced this far. Table 5 (based on data from short telephonic interviews with clinic personnel) shows a summary of how DOTS is managed in each clinic. 12

18 Table 5: Information from telephonic interviews with TB coordinators at clinics in Kopano Town Virginia Local Authority Clinic Meloding Clinic Saaiplaas Clinic Welkom Local Authority Clinic Bophelong Clinic Bronville Clinic Khotsong Clinic Thabong Clinic Riebeeckstad Clinic Winburg Local Authority Clinic Khamohelo Clinic Mobile Clinic Allanridge Local Authority Clinics x 3 Hennenman Phomolong clinic DOTS system Traditional white clinic where patients are generally better off, so that there are few TB cases. Patients generally come to the clinic on a daily basis, and receive treatment from an assistant nurse. Three volunteers trained by SANTA. Visit some of the patients who cannot come to the clinic at home. Family members are not used for giving TB medication, but are given information about TB and the importance of taking TB medication regularly. Clinic nurse (TB coordinator) is responsible for DOTS. Very few TB patients (± 9 patients). All come to the clinic on a daily basis. Clinic nurse (TB coordinator) is responsible for DOTS. Patients come to the clinic every day. Alternative arrangements can be made, e.g. they can come in every second day. Family members given information and may then be responsible for giving the patient his/her medication on a weekly basis. Employers also used for DOTS. Two staff members are responsible for DOTS, but only do home visits in critical cases. Family members given information and may then be responsible for giving the patient his/her medication on a weekly basis. Patients generally come to the clinic on a daily basis. Family members given information and may then be responsible for giving the patient his/her medication on a weekly basis. Patients evaluated on a two weekly basis. Patients generally come to the clinic on a daily basis. Family members given information and may then be responsible for giving the patient his/her medication on a weekly basis. Patients evaluated on a two weekly basis. Employer can be contacted if the patient trusts him/her. Patients come in to a clinic on a daily basis. Staff assisted by a health educator employed by SANTA, who visits TB patients and encourages them to come to the clinic on a daily basis for their TB medication. Family member can be given information and is then responsible for giving the patient his/her medication. This is done for very ill patients. Employer can be given information and is then responsible for giving the patient his/her medication Patients come in to the clinic on a daily basis. Follow-up of patients who default via the telephone and by sending messages. All patients come in to the clinic on a daily basis. Follow-up of patients who default via the telephone and by sending messages. All staff at the clinic work with TB patients. Patients come on a daily basis. Home visits are done if necessary. Family member can be given information and be responsible for giving the patient his/her medication. Mobile clinic nurse dispenses medication during visits to a farm approximately every seven weeks. A family member with a strong bond with the patient is identified. This family member is given information and is then responsible for giving the patient his/her medication. A few patients are on a clinic-based system. Community based DOTS in operation for three quarters of TB patients. This system is coordinated between all three clinics. DOTS supporters visit the clinic weekly to collect medication and report back to the nurse in charge of them. Mobile clinics do home visits, if patients are not able to come into the fixed clinic. All TB patients must come to the clinic on a daily basis. They are supervised by a professional nurse. If a patient is not able to come to the clinic, the mobile clinic nurse does home visits before going out on her rounds, and observes them taking their medication. Mobile clinic nurse also traces defaulters. If a patient is unable to come to the clinic on a daily basis, a community member close to him/her (i.e. family member or friend) is identified to administers the TB drugs to the patient daily he then has to come to the clinic with the patient on a regular basis. Family members are also used on the farms. 13

19 Town Hennenman Local Authority Clinic Odendaalsrus AM Kruger Local Authority Clinic Boitusong, Bophelong and Phedisaang Clinics Mobile Clinics Theunissen Lusaka Clinic Mobile Clinics Community Health Centre Mmamahabane Clinic Ventersburg Mobile clinic DOTS system Only one TB patient who comes to the clinic on a daily basis. Most persons live too far away to attend the clinic every day, therefore the health care workers together with the TB patient identify a family member to serve as a TB supporter. The supporter receives the TB medication at least every two weeks. The patient and supporter report to the clinic for supervision. A mobile clinic does go to the farms each Wednesday to search for defaulters. Patients who can, attend the clinic daily for their medication and are observed by the professional nurses. These clinics also work with community supporters trained by SANTA and the Department of Health who only support patients who have problems attending the clinics (e.g. HIV patients who do not want to be seen at the clinic, old people or people who are very ill). These supporters are co-ordinated and supervised by the clinic personnel. In some cases these supporters are given a weekly supply of medication. If employers are willing, they observe the patient taking his/her medication. Supporters also look for defaulters and motivate them to come to the clinic. Farmers and their wives usually act as DOTS supporters. Family members are not generally used as this causes conflict in the families. These supporters are given the patient cards and are trained to observe the patient every day. Patients attend the clinic every day for DOTS. In cases where it is impossible for patients to come to the clinic, a general assistant from the clinic takes the medication to the patients and/or family supporter on a weekly basis. General assistants also trace defaulters. If a family supporter can come to the clinic, he/she is encouraged to do so in order to collect the medication. In some cases employers support the patients, but often the patients do not want their employers to know that they have TB. Family members act as DOTS supporters for learners during the school holidays. Family members act as DOTS supporters for adults with TB. Teachers act as DOTS supporters for learners during the school terms. Patients are supervised by clinic staff and most patients do not have a problem coming to the clinic each day as the township is situated within close range of the clinic. Patients are supervised by the clinic personnel. If a patient is unable to come to the clinic daily, he/she is given a weeks supply of medication to take home but are asked to identify a family member who can directly observe them taking their medication. This supporter is not asked to come to the clinic for the professional nurse to explain to him/her the importance of DOTS. In cases where there is no school on the farm, a family member or neighbour is identified to act as a DOTS supporter, otherwise teachers are used. This system works well as most farms have a farm school. Tracing defaulters The tracing of defaulters is linked to the DOTS system in that one of the responsibilities of the DOTS supporter is to supervise the patient s adherence to treatment. A good DOTS system should therefore keep the default rate down. However, the high proportion of re-treatment cases indicates that the defaulter rate is high and adherence to treatment rate is low. The main reasons for defaulting in this area were indicated to be, firstly, that migrant workers often do not stay in one place long enough to complete their treatment and secondly that patients have transport difficulties. According to one professional nurse, the side effects of TB drugs are not common and not a reason for defaulting. However, other nurses indicated that side effects were encountered on a reasonably regular basis, although they agreed that side effects do not significantly contribute to patients defaulting. According to the TB coordinator at the Clinic A, it is generally not possible for staff to trace defaulters because they do not have time or transport to physically go and search for a person who has defaulted. Health care providers therefore aim to prevent defaulting by building a trusting relationship with their TB patients and informing them about the necessity 14

20 of completing treatment, as well as by trying to find them a community-based DOTS supporter. At some clinics, nursing personnel do trace defaulters, sometimes with the assistance of the volunteer DOTS supporters and SANTA. At Clinic C, the mobile TB team traces defaulters with their mobile unit. In some areas, there were said to be no problems with tracing of defaulters, since the community is small. Patient counselling and health education The district communicable disease coordinator indicated that she devotes special attention to ensure that all nurses know how to counsel a TB patient and that they invest enough time in this counselling to adequately prepare the patient for the treatment period. Patients are supposed to receive health education on matters relating to TB, including issues related to hygiene and having a balanced diet. However, it was also noted that some health care providers prefer not to work with TB patients, and that the presence of HIV and AIDS contributes to lack of staff motivation to provide TB services. The fear of HIV/AIDS being associated with TB was also reported to be an issue affecting communities. Six of the seven patients interviewed confirmed that they received health education, including being told they had TB, being given an explanation of what TB entails, the importance of taking medication regularly and that TB can be spread by breathing, spitting and coughing. Four of the interviewed patients did, however, appear to be slightly less informed than the other three patients. This was evident as some of the patients did not even know when their treatment would be completed. The management of very ill TB patients According to the Assistant Director: Communicable Disease Coordinator, serious TB cases should be referred to district hospitals (Odendaalsrus, Virginia and Winburg) for a period of up to 2 weeks for stabilisation, after which the patient is referred back to the clinic for further management. If a patient is too ill to be treated by a district hospital, he/she should be transferred to the provincial TB Hospital in Santoord or the Goldfields Regional Hospital in Welkom. The closure of the Allanridge TB Hospital in the region was also said to have created numerous problems with the referral of TB patients for hospital care. However, some personnel seem to be confused as to where exactly TB patients should be referred. A clear referral policy with criteria for admission seems to be lacking. This is compounded by the fact that the TB bed capacity of the district hospitals seemed to be inadequate to deal with the need in the district. Some TB patients were reportedly sent home after only two days of in-patient care, and in some cases clinics were unable to get their patients admitted to their referral district hospital. For example, one TB patient had recently been referred to a halfway house in Welkom (meant for HIV/AIDS patients) because there were no TB beds available at the referral hospital. It was also said that the preparedness of the District hospitals to receive TB patients is still poor, as they are unused to managing TB patients. There were complaints about poor backreferral letters from district hospitals and a general lack of communication between different levels of TB care from some clinics. Finally, transporting patients from the clinic to the district hospital was said to sometimes be a problem. On the other hand there are clinics, such as Clinic B, that indicated that they experienced no problems with referring TB patients to Virginia Hospital, or with getting back-referrals from the hospital. Follow-up sputum tests 15