Health literacy on tuberculosis amongst vulnerable segment of population: special reference to Saharia tribe in central India.

Background & objectives: Health literacy on tuberculosis (TB) is an understanding about TB to perform activities with regard to prevention, diagnosis and treatment. We undertook a study to assess the health literacy on TB among one of the vulnerable tribal groups (Saharia) in central India. Methods: In this cross-sectional study, 2721 individuals aged >15 yr from two districts of Madhya Pradesh state of India were interviewed at their residence during December 2012-July 2013. By using a short-form questionnaire, health literacy on cause, symptoms, mode of transmission, diagnosis, treatment and prevention of TB was assessed. Results: Of the 2721 (Gwalior 1381; Shivpuri 1340) individuals interviewed; 76 per cent were aged <45 yr. Living condition was very poor (62% living in huts/katcha houses, 84 per cent with single room, 89 per cent no separate kitchen, 97 per cent used wood/crop as a fuel). Overall literacy rate was 19 per cent, and 22 per cent had >7 members in a house. Of the 2721 respondents participated, 52 per cent had never heard of TB; among them 8 per cent mentioned cough as a symptom, 64 per cent mentioned coughing up blood, and 91 per cent knew that TB diagnosis, and treatment facilities were available in both government and private hospitals. Health literacy score among participants who had heard of TB was <40 per cent among 36 per cent of respondents, 41-60 per cent among 54 per cent and >60 per cent among 8 per cent of respondents. Interpretation & conclusions: The finding that nearly half of the respondents had not heard of TB indicated an important gap in education regarding TB in this vulnerable population. There is an urgent need to implement targeted interventions to educate this group for better TB control.

Situation of drug resistant tuberculosis in Saharia tribe of central India.

Background & objectives: The information on multidrug resistant tuberculosis (MDR-TB) situation amongst Saharia, one of the Particularly Vulnerable Tribal Groups (PVTGs) in Madhya Pradesh, India, is not available. Hence, this study was undertaken to find the situation of MDR-TB amongst Saharia PVTG in two districts of Madhya Pradesh. Methods: Community based cross-sectional TB prevalence surveys were conducted among Saharia PVTG in Gwalior and Shivpuri districts of Madhya Pradesh. Chest symptomatics were identified from the individual registered for the study. Two sputum samples were collected from each of the eligible individuals, transported to the laboratory, and were examined by Ziehl-Neelsen (Z-N) smear microscopy and solid medium culture methods. Drug susceptibility testing of the isolates was done by indirect proportion method on solid medium. Results: MDR rate was 2.2 per cent of new cases and 8.2 per cent among the previously treated cases of TB in Gwalior while it was two per cent among the previously treated cases in Shivpuri district. Interpretation & conclusions: Though the prevalence of tuberculosis in these districts was alarmingly high, the MDR rates were more or less similar to national average. However, the findings of this study highlight the need for active intervention so that the MDR-TB is kept under control.

Pulmonary tuberculosis - a health problem amongst Saharia tribe in Madhya Pradesh.

Background & objectives: The information on tuberculosis (TB) situation amongst Saharia, one of the particularly vulnerable tribal groups (PVTGs) in Madhya Pradesh, is not available from Gwalior division of the state. Hence, this study was undertaken to estimate the prevalence of pulmonary tuberculosis (PTB) disease amongst them. Methods: A community based cross-sectional TB prevalence survey was undertaken among Saharia PVTG in Gwalior district of Madhya Pradesh. A random sample of villages predominated by Saharia tribe was selected from all the blocks in proportion to the size of Saharia population in each block of the district. All eligible individuals were questioned for chest symptoms relating to TB. Two sputum samples were collected from each of the eligible individuals, transported to the laboratory, and were examined by Ziehl-Neelsen(ZN) smear microscopy and solid media culture methods. Results: Of the total 10,259 individuals eligible for screening, 9,653 (94.1%) were screened for symptoms. Overall prevalence of PTB was found to be 3294 per 100,000. The prevalence increased with age and the trend was significant (p<0.001). The prevalence of TB was significantly higher amongst males (5497/100,000) as compared to females (1376/100,000) (p<0.001). Interpretation & conclusions: The study results provide vital information on the current situation of pulmonary TB disease among the Saharia tribal community in Gwalior district of Madhya Pradesh. In view of high PTB disease prevalence among this PVTG, there is an urgent need to improve and further intensify TB control measures in this area.

Performance of Revised National Tuberculosis Control Programme (RNTCP) in tribal areas in India.

Background & objectives: The Revised National Tuberculosis Control Programme (RNTCP) provides free diagnostic and treatment services to all tuberculosis (TB) patients registered under it. Equitable access, implying a preference for the most hard-to-reach groups particularly for tribal areas, is a major concern for RNTCP. This study was conducted to assess the performance of RNTCP in terms of case detection and cure rates in areas dominated by tribal groups in India. Methods: We used the RNTCP data collected by the Central TB Divison, Government of India. RNTCP has a systematic monitoring mechanism which tracks the outcome of every patient put on treatment. There is a standardized recording and reporting structure in place; indicators are monitored regularly at every level of the health system; and regular supervision ensures quality of the programme. The main indicators include the number of cases diagnosed and the percentage of patients who are successfully treated. these indicators were used to assess the RNTCP performance in tribal areas. Results: We observed a poor performance in terms of case detection rate (CDR) in tribal and backward districts as compared with other districts in India. Among tribal districts 53 per cent in 2010, 45 per cent in 2011 and 56 per cent in 2012 had CDR of new smear positive <70%. It was also observed that 26 per cent of tribal dominated districts had CDR of <51 per cent in 2012. More than 50 per cent of tribal districts were not able to achieve more than 85 per cent of cure rate. Interpretation & conclusions: The findings of this study suggested that the overall RNTCP performance in tribal areas was not optimal, and the target of >85 per cent of core rate was achieved by less than half of the tribal districts.

Assessment of X-ray Readers in TB Prevalence Surveys.

A prevalence study was carried out a rural community in Tiruvallur district in Tami Nadu to standardize the method of assessing an X-ray reader in tuberculosis (TB) prevalence surveys by means of different measures of agreement between the reader and a Standard Reader (SR). The exercise on assessing the X-ray readers was carried out on two occasions; one involving three trainee readers (R1, R2, and R3), and the other involving one trainee reader (R4). The extent of agreement was estimated using Kappa statistics (K), over-diagnosis, under-diagnosis, crude agreement and prevalence adjusted bias adjusted kappa (PABAK). The overall performance of readers R1, R2 and R3 was not satisfactory in terms of K (21, 34 and 14%) in the first assessment. The K, over-diagnosis and under-diagnosis were estimated to be 61, 28 and 4% for R1, 63, 18 and 4% for R2 and 58, 31 and 5% for R3 in the final assessment. This suggested that R2 performed well compared to the other two readers. The K was 68% for R4 in the first assessment. As the over-diagnosis was to the extent of 40%, the trainee reader underwent one more assessment. The K was 64% which was as good as before, but there was no improvement in the over-diagnosis (43.5%) in the second assessment. Based on the performance, only one reader (R2) was certified as qualified for X-ray reading in the first occasion while the reader (R4) assessed in the second occasion was not qualified. These findings were subject to the inherent variation in the SR’s readings against which the readers were assessed.

Perceptions of tuberculosis patients about private providers before and after implementation of revised national tuberculosis control programme.

Background: Most of the persons with chest symptoms in India approach private providers (PPs) for health care. It has been observed that patients who start treatment with PPs for tuberculosis (TB) frequently switch over subsequently to the public sector. The reasons for this discontinuation and their perceptions of the TB care provided by the PPs are unknown. Objective: To document the perceptions about PPs India’s Revised National TB Control Programme (RNTCP) and the reasons for discontinuation of treatment with PPs and subsequent attendance at a public provider. Methods: This was a cross sectional study on patients registered under TB programme during 1997 and 2005in rural and urban areas. During this period patients who were initially diagnosed and treated for TB in a private clinic and subsequently shifted to public health facility were considered for the study. A semi-structured interview schedule was used to collect the factors related to patient’s perceptions on PPs, the factors responsible for initiating treatment with PPs, reasons for discontinuing treatment with PPs, and their willingness to continue treatment from government health facilities were collected. This data was compared with data collected in 1997 before implementation of the RNTCP. Results: A total of 1000 and 1311 TB patients were registered during 1997 and 2005 respectively. Among them, 203 (20%) and 104 (8%) patients were identified as having been initially diagnosed and started on TB treatment by PPs and subsequently shifted to government health facilities. There were significant changes in reasons for selecting PPs between the two periods: being convenient (47% vs 10%; p<0.001), quality care (41% vs 19%; p<0.001), motivated by others (49% vs 19%; p<0.001), confidentiality (19% vs 9%; p<0.05) and known doctor (6% vs 28%; p<0.001) respectively. Financial problems were the most common reason for discontinuation of treatment in both periods. The use of sputum test for diagnosing TB by PPs was significantly increased after RNTCP implementation. Conclusion: This study suggests that slowly perceptions of patients have changed towards PPs, and RNTCP has begun to gain acceptance amongst patients in terms of convenience, confidentiality and personal care.

DOTS Reacdes Socially Marginalized Population in the Community a Study from a Rural Area of South India.

We report here that the Directly Observed Treatment, Short course (DOTS) is reaching all tuberculosis patients in the community irrespective of social classification based on the analysis from the tuberculosis prevalence survey and programme performance during 1999-2003 from a rural area in Tamilnadu, South India. New smear- positive cases treated under a DOTS programme were classified in two groups namely; scheduled caste living in colony and other population. The prevalence of smear- positive cases among the scheduled caste population was 1.9 times higher than the other population and this was reflected in the notification also. The successful treatment outcome was also similar in these two groups (75% and 78% respectively; overall 77%). From these findings it is concluded that people living in colony have equal access to DOTS as those in the village.

Psycho-social dysfunction: perceived and enacted stigma among tuberculosis patients registered under revised national tuberculosis control programme.

OBJECTIVE: To examine the perceived and enacted stigma experienced by TB patients and the community. METHODS: We interviewed 276 TB patients registered for treatment during January-March 2004 in government health facilities of two Tuberculosis Units of south India. Data on perceived and enacted stigma were collected after two months of starting treatment, using a semi-structured interview schedule. In addition, four Focus Group Discussions were conducted among Directly Observed Treatment (DOT) providers and community members. Narrative summaries were also taken down to collect additional qualitative information. RESULTS: Of the 276 patients, 190 (69%) were males. There was no significant difference between the genders in relation to social stigma. Perceived stigma was higher than enacted stigma in both genders and significantly higher among males (Low self esteem p < 0.05), change of behavior of community (p < 0.05), ashamed to cough in front of others (p < 0.05). CONCLUSION: Considering the social and emotional impact of the disease, it is essential to adopt support strategies to enhance acceptance and for a successful health programme.

DOTS reaches socially marginalized population in the community: a study from a rural area of South India.

We report here that the Directly Observed Treatment, Short course (DOTS) is reaching all tuberculosis patients in the community irrespective of social classification based on the analysis from the tuberculosis prevalence survey and programme performance during 1999-2003 from a rural area in Tamilnadu, South India. New smear- positive cases treated under a DOTS programme were classified in two groups namely; scheduled caste living in colony and other population. The prevalence of smear- positive cases among the scheduled caste population was 1.9 times higher than the other population and this was reflected in the notification also. The successful treatment outcome was also similar in these two groups (75% and 78% respectively; overall 77%). From these findings it is concluded that people living in colony have equal access to DOTS as those in the village.

Reasons for non-compliance among patients treated under Revised National Tuberculosis Control Programme (RNTCP), Tiruvallur district, south India.

OBJECTIVES: To elicit reasons for treatment default from a cohort of TB patients under RNTCP and their DOT providers. METHODS: A total of 186 defaulters among the 938 patients registered during 3rd and 4th quarters of 1999 and 2001 in one Tuberculosis Unit (TU) of Tiruvallur district, Tamil Nadu and their DOT providers were included in the study. They were interviewed using a semi-structured interview schedule. RESULTS: Sixteen (9%) had completed treatment, 25 (13%) died after defaulting, and 4 (2%) could not be traced. Main reasons given by the remaining 141 patients and their DOT providers were: drug related problems (42%, 34%), migration (29%, 31%), relief from symptoms (20%, 16%), work related (15%, 10%), alcohol consumption (15%, 21%), treatment from other centers (13%, 4%), respectively. Risk factors for default were alcoholism (P<0.001), category of treatment (P<0.001), smear status (P<0.001), type of disease (P<0.001) and inconvenience for DOT (P<0.01). CONCLUSION: This study has identified group of patients vulnerable to default such as males, alcoholics, smear positive cases, and DOT being inconvenient. Intensifying motivation and counselling of this group of cases are likely to improve patient compliance and reduce default.

Risk factors for non-adherence to directly observed treatment (DOT) in a rural tuberculosis unit, South India.

OBJECTIVE: To identify risk factors for non-adherence of tuberculosis (TB) patients to DOT. METHODS: Retrospective study of TB patients by logistic regression analysis to identify risk factors for non-adherence. RESULTS: Of the 1666 patients interviewed, 1108 (67%) adhered and 558 (33%) did not adhere to DOT. Of 558 patients, the risk factors associated with non-adherence were illiteracy (39%), difficulty in accessing health facility (57%), and non-government DOT centre (43%). CONCLUSION: Patients should be educated about tuberculosis and importance of DOT. All DOT centres, including Non-government DOT centres, should be made more accessible and patient-friendly.

Identifying effective communication channels in a rural community: A field report from south India.

Background: There is scarcity of information on communication channels in rural areas where about 38% of people are illiterate. Objective: To identify the channels of communication available in rural areas by interviewing key informants. Method: This study was conducted in 51 villages of Ellapuram block, Tiruvallur district, Tamil Nadu in the year 2004. Key informants selected from the villages were interviewed by a Medical Social Worker. The questionnaire included information on modes of communication channels, availability of markets, public facilities, and local associations. Result: The study block included 9893 households covering a population of 39255. Their main occupation was agriculture (86%). Electricity was available in all the villages. More than 80% of the villagers had community TV/cable connections, >50% of the villages had cinema star fan associations, mahila mandals, youth clubs, self-help groups, anganwadi centres and ration shops. The main source of communication as per interview was television (100%), wallposters (55%); publicity through panchayat office meetings (53%) and dandora or beat of drums(43%). Conclusion: Main communication channels, commonly used to disseminate information were TV and wall posters. More than 50% of villages had local associations which can be used for effective communication. This information is vital for disseminating important information on public health programmes and educating the rural community.

Performance of a DOTS programme: Administrative and Technical Challenges - A field report from a district in south India.

Background: Performance of tuberculosis (TB) control programme depends on the functioning of health facilities (HFs). TB control programmes have been evaluated based on the programme indicators of conversion and cure. We have attempted to correlate the programme performance based on the availability of staff and their performance at the HF level. Objective: To correlate the performance of HFs to programme indicators, conversion and cure of patients treated under DOTS, in a district of south India. Design: Analysis of the data on new sputum smear-positive cases registered in 17 HFs during 1999-2003 was undertaken using TB register. The HFs with a low conversion or cure rates were identified and the reasons for the same were analysed. A scoring system was designed for the functioning of the HFs based on staff availability, supervision and review meetings which was correlated with programme performance. Univariate and multivariate analyses were performed. Results: Of 1893 new smear-positive patients registered during the study period, conversion was 1582 (83.6%) with cure rate of 76.4% (1447 of 1893), 254 (13.4%) default, 94 (5.0%) failure and 85 (4.5%) death. The conversion rates increased from 76% in 1999 to 87% in 2003; a statistically significant trend (c2 = 15.9; P<0.001). Similarly, a significant increase in trend (c2 = 4.0; P < 0.05) was observed in cure rates also (71 to 80%). The HFs were broadly classified into four groups namely; poor, fair, good and very good based on functioning scores .Correlation co-efficient was 0.77 between functioning of the HFs and conversion, and 0.76 between functioning and cure (P<0.01). Lack of regular review meetings was found to be independently associated with poor programme performance. Conclusion: Availability of staff such as Medical Officer, Laboratory Technician, and regular supervisory visits and review meetings are essential for a well functioning of programme. There is significant impact on DOTS with good functioning of HFs.

Socio-economic dimensions of tuberculosis control: review of studies over two decades from Tuberculosis Research Center.

Tuberculosis (TB) affects the most productive age group and the resultant economic cost for society is high. Even though diagnostic and treatment services under TB control are offered free of cost, TB patients do incur out of pocket expenditure. Tuberculosis Research Centre under took a series of studies on economic aspects of TB. We interviewed TB patients enrolled under TB control programme in south India, and assessed the following: socio-economic status of patients (SLI - standard of living index) and economic impact on patients, families both before and after Revised TB Control Programme (RNTCP) and the impact of parental TB on children. In addition patient's perceptions of physical, mental, social well being during and after completion of treatment were also elicited. A TB patient incurs out of pocket expenditure of Rs 5986 amounting to about 13,000 crores a year for the country; 11% of children dropped out of school on account of parental illness and 20% of the children had to take up employment in order to supplement income especially if the father had TB. About 64% of TB patients registered under RNTCP were poor (low SLI). The provider cost to treat a TB patient under RNTCP was Rs 1587/- for Category I, Rs 1924/- for Category II and Rs 1417/- Category III. At the end of treatment even though 47% of patients continued to have respiratory symptoms, 54% of patients perceived 'happy mental status'. Majority of the patients registered under RNTCP were poor. Patients' and provider costs and the impact on patients including families on account of TB were enormous. About half of TB patients, despite completing treatment successfully had persistent respiratory ill health resulting in frequenting health facilities. This information is vital for programme planners indicating that the existing control programs have been ineffective. To achieve success in control programs, the existing ones should be amended as there is evolution of resistance in the parasite as well as the vector. Public health education, to make the people aware about preventive aspects of the disease is important. The possibility of the existence of animal reservoirs should also be considered and checked out for better control measures.

Is migration a factor leading to default under RNTCP.

Objective: To study the contribution of migration to treatment default among tuberculosis patients treated under RNTCP Methods: Retrospective study by interviewing the defaulters using semi-structured interview schedule to elicit the reasons for default including migration. Results: Of the 531 patients registered under TB programme in 3rd and 4th quarters of 2001, 104 (20%) had defaulted for treatment. Among defaulters, 24% had migrated. The reasons for migration were: occupational (48%), returning to the native place (28%), domestic problems (12%) and other illnesses (12%). Conclusion: After initiation of treatment, patients should be encouraged to report to the provider, if they are leaving the area, to transfer treatment to the nearest centre to ensure continuity of treatment. These measures will help to reduce default on account of migration and achieve the desired outcome in RNTCP. Availability of treatment under the DOTS strategy should be popularized among patients, providers and community.

Estimating provider cost for treating patients with tuberculosis under Revised National Tuberculosis Control Programme (RNTCP).

Background: The Indian tuberculosis control programme is the second largest health programme in the world. Sustaining this programme in India will require continued financial support, particularly for drugs and contractual personnel. In addition, the costs for diagnosis, supervision and salaries for regular programme personnel need to be sustained. Objective: To measure unit provider cost for treating patients with tuberculosis. Methods: All government health facilities situated in one tuberculosis unit (TU) of Tiruvallur district were visited in order to evaluate daily practice of TB diagnosis and treatment. We interviewed administrators in these health facilities to gather data on modalities for diagnosis, treatment and monitoring of tuberculosis patients. In addition, relevant financial records from all health facilities were scrutinised for data collection. The cost analysis was done for diagnosis, treatment and monitoring of TB patients treated under DOTS programme in the year 2002 For this study only the recurrent cost (not the capital cost) is considered, even though the programme puts in a lot of investment at the preparatory stage of the programme e.g. upgrading of labs and drugs stores, microscopes, motorcycles etc. Cost incurred on smear microscopy, chest X-ray and drugs were classified as direct cost. Indirect cost is calculated based on proportion of staff time for TB care delivery and for supervision of TB services. The exchange rate at the time study was 1$=Rs 46. Results: Unit cost for smear microscopy was estimated to be Rs 10/-; for radiography Rs 25/-; and drug cost for Category I Rs 392/-; Category I with extension Rs 495/-; Category II Rs 729/-; Category II with extension Rs 832/- and Category III Rs 277/-. Including other recurrent expenditures like salary, materials, and maintenance, the overall unit provider cost to treat a TB patient was Rs 1587/- for Category I, Rs 1924/- for Category II and Rs 1417/- Category III. Conclusion: TB inflicts considerable economic burden on the overall health system. This information is vital for policy makers and planners to allocate adequate budget to the programme.

Costs to patients with Tuberculosis treated under DOTS Programme.

Background: The economic burden of TB in India is enormous as TB perpetuates and exacerbates poverty. Revised National Tuberculosis Control Programme (RNTCP) based on DOTS strategy is currently being implemented in India. The purpose of this study is to estimate the costs incurred by tuberculosis patients treated under RNTCP in a district in Tamilnadu where services are decentralized for diagnosis and treatment. Method: In all, 455 patients registered under RNTCP between June and December 2000, in Tiruvallur district were interviewed to collect the following information: Demographic, socio-economic characteristics of patients, expenditure incurred due to illness and effect of illness on employment. Based on the data collected, various costs (direct medical, nonmedical, indirect and total costs incurred on account of tuberculosis before and during treatment) were estimated. In addition Standard of Living Index (SLI) was calculated for patients. Results: Of 455 patients, 62% had low SLI. The median direct, indirect and total costs for 343 patients who successfully completed treatment were as follows: pre treatment direct costs were Rs 340, during treatment direct costs Rs 100; more than 50% of patients did not incur any indirect costs in both pre treatment and during treatment periods and overall total costs were Rs 1398. About 12% of patients lost more than 60 workdays and after completing treatment, 88% returned to work. Conclusion: For patients registered under RNTCP in Tiruvallur district in Tamilnadu, the findings that the total patient costs were Rs 1398/- and also the patients returned to work early establishes the economic benefits to patients treated under DOTS and lend support to rapid expansion of DOTS programme, particularly in low-income countries.

Feasibility of Community DOT Providers for Tuberculosis Treatment in HIV infected individuals - A Pilot Study.

Background: This paper summarises our experiences about the role of community DOT providers in management of TB treatment in HIV infected persons in a mainly rural population of Tamilnadu. Objectives: To evaluate the feasibility of employing Community DOT providers for the treatment of tuberculosis in HIV infected persons, to study patients’ acceptance of Community DOT providers in the closely-knit village communities and to find out the attitude and awareness of DOT Providers on TB and DOT. Method: A total of 62 tuberculosis patients (58 males and 4 females) with HIV infection attending the Government Hospital for Thoracic Medicine, Tambaram and Chennai between July 1999 and July 2002 were selected for this study. Patients were given all the doses under supervision (clinic-based DOT) during the initial intensive phase and through Community DOT providers in the continuation phase. Data was collected both from the patients and their DOT providers about their views on DOT, advantages of DOTS, drug intake, treatment adherence, problems faced by the patients and their DOT Providers in addition to the level of awareness of Community DOT Providers on tuberculosis and DOTS. Results: Regarding treatment adherence, 95% of 62 patients had taken >75% of drugs and 39% had taken 100% drugs. DOT was appreciated both by the patients and their DOTS Providers since it is cost-effective and patient-friendly. Conclusions: Community contribution to TB care even among HIV infected population is feasible, affordable and costeffective. There is a need for greater health education and training on tuberculosis and DOTS for community DOT Providers.