The main features of TB as a community problem are well known. Its incidence is rare among people who lead an open air life and among those who live in small communities, but it increases in proportion to the degree of overcrowding. Among other factors contributing to the spread of the disease, mention may be made of malnutrition and undernutrition, unhygienic housing and environmental conditions and, certain occupations, particularly those associated with the inhalation of dust containing fine particles of silica.

No age, sex or race is exempted from TB. In countries where the disease has been prevalent for a long time, susceptibility to infection is highest among infants and a varying measure of protection becomes developed as the years go by, through small doses of infection being picked up by most individuals. For instance, only a small proportion of those who get infected, in Europe and America, develop the disease or die of it, while the majority acquire a considerable degree of protection from it. On the other hand, in communities exposed to TB for the first time, example, primitive races coming in contact with persons from the highly tuberculised countries, the disease occurs in a virulent form and the rate of its spread is rapid. In countries with a long history of TB infection, it is only among infants that conditions exist which approximate to those of the highly susceptible communities.

The article emphasises the importance of identifying human factors which result in the under-utilization of TB services. Two areas, highly influenced by human factors, aside from the personal and sociological factors that determine the sickness behaviour of TB patients are: (1) the disease and its attributes, (2) the health care delivery system. Reviving the approach that TB is a serious and major disease and integrating TB services as components of primary health care, as done in the DTP, are important in TB control.

In recent years, we have been pleading, unsuccessfully so far, for the development of sociological tools so that we can measure the extent of the disease both epidemiologically as well as sociologically. And, also for using the sociological parameters for assessing the impact of NTP. It stands to reason that long before the epidemiological parameters show an impact, a reduction in suffering as well as altered pattern of action-taking may show a change in the disease as it goes down and away in a country.

Two hundred and ninety nine patients registered for treatment with the public health services-103 with rural PHC`s and 196 with urban TB clinics in Pune district were interviewed in order to understand social and operational determinants that influence treatment behaviour in lung TB. Detailed quantitative as well as qualitative information was elicited. The study showed that despite weak, if not missing, health educational inputs, patients' understanding of TB was satisfactory. Their preference for private doctors over public health services for TB, their frequent change of health providers for diagnosis as well as treatment, their poor treatment adherence despite knowledge of its ill-effects and their related actions perceived clearly as deleterious to their own good were influenced more by social, economic, and operational factors than by their self-destructive attitude and behaviour. The study concluded that it was the availability, affordability and acceptability of health facilities for TB-factors related primarily to the provider behaviour- that deserved greater and priority attention. Attempts at rectifying provider behaviour were likely to be more productive than those at disciplining patients.

Common psychological trends in TB patients are described. Psychological complex of 17 TB patients treated in their homes are investigated, and it is concluded that there are no specific patterns of behaviour in persons suffering from TB. The physician`s role in treating TB cases is discussed.

The study concerned an investigation of the relationship between selected personality dimensions and several measures of overt behaviour among hospitalized TB patients. A structured Q-sort was constructed to measure the selected dimensions of personality. It was administered to all patients who were 45 years of age and less and who were admitted to the Madison Veterans Administration Hospital, Wisconsin, USA. Data were obtained at an early point in each patient's hospitalization. Assessment of patient behaviour was accomplished by use of the Ward Behavior Rating Scale. The head nurse of each ward rated each subject of her ward, using this scale, approximately three months after the patient's admission to the hospital. It appears that the manifest behaviour of hospitalized tuberculous patients, both in its voluntary aspects (such as ward behaviour) and in its involuntary aspects (such as physiologic response to medical treatment), is to a significant extent a function of personality factors. Some of these personality variables, assessed early in hospitalization, are related predictably to subsequent behaviour patterns. The general implication of the findings supports the view that comprehensive management of TB must take the total person and not only his physical disease as the object of treatment.

The present report gives information on the age, family conditions, severity of the disease and its onset in relation to the beginning of the patient`s unsocial behaviour, length of treatment, reasons for interruption of treatment etc. On the basis of these, the results that might be possible with normal and compulsory treatment are discussed, and attention is drawn to the consideration that would make treatment and isolation desirable.

For patients given treatment for self administration at home, there is inherent problem of regularity of intake of drugs particularly if the treatment is long term. It is a common observation that patients with myxoedema, auricular fibrillation, or epilepsy even when their malady is under control are not completely regular. It is just that they take sufficient number of doses of the medicine for successful control of their disease. In leprosy, self administration is rarely relied upon and some form of supervised administration of Diaminodiphenylsulphone (DDS) is devised. This phenomenon is observed even with short term treatment with acute diseases. In 1955, Mohler et al., reported that 32% of 217 patients took less than prescribed doses of one week oral penicillin course for treatment of acute pharyngitis/otitis media. Turning from treatment to prophylaxis, reference may be made to rheumatic fever. WHO expert committee in 1957, stated that unless physician take continuous responsibility, the patient and his family are motivated to take drugs regularly and continuous medical surveillance is done by Public Health Services, the prophylaxis cannot be given successfully. The difficulty in keeping persons who adopt small family norms to observe contraceptive measures is well known. It therefore seems likely from experience in other fields that self administration of drugs may present some problems in TB also.

Experience in Pulmonary TB: Although the effective drug regimen for treatment of TB on mass scale is mandatory, the regularity with which patients will self administer the anti TB drugs for long time is also of fundamental importance. Some amount of information obtained on self administration of anti TB drugs at home from an on going study on “Home Vs Sanitorium treatment” at Tuberculosis Chemotherapy Centre, Madras (Bull WHO 1959, 21, 51-144) is presented here. This will be useful in indicating the problems of self administration of drugs in TB. The regimen used in the study is 12PH (PAS & Isoniazid for 1 year) six to seven cachets (each cachet containing 1.25 gm PAS & 25 mg of Isoniazid) according to body weight. Once a week the patient collects supply of drugs from the centre. They are motivated along with their family about the importance of regularity for the total duration of one year and informed that early disappearance of symptoms may not be considered as cured. Home visits by the field staff are made once a week in the initial 2 months & later on fortnightly basis to collect urine for ferric chloride test for presence of PAS, sputum for culture & sensitivity for Mycobacterium TB (M.tb) and counting of stock of cachets. Some of the visits made are unexpected. The patients are assessed clinically, radiographically and bacteriologically every month.

Preliminary analysis of urine for the presence of PAS was made in a group of 79 patients on home and 81 on sanitorium series. Of the 79 patients on home, 58 patients who completed one year of treatment, 20% gave at least one test negative in the first six months, 14% in the later six months & 9% of the remaining 21 recently admitted patients. In the sanatorium group, 58 of the 81 patients who completed one year of treatment, 4% gave negative results during first six months of treatment and only 0.6% during the second six months. Thus showing the irregularity is high during first six months and the problem of missed treatment is peculiar to the group treated at home, where the patients are not under direct observation. Rregularity by counting cachets is not accurate as the drugs can be sold, given or thrown away; it is best reliable during unexpected visits & can be only complimentary to urine testing. During interviews, reasons for omitting doses were never forthcoming & were obtained by deep probing and suggestions. Thus the questioning indicated the reasons for failure of drug intake as follows: i) Very few patients have minor side effects. ii) Some are unable to satisfy hunger & some attribute-unassociated complaints to the medicine. iii) Few are irregular due to religious reasons. iv) A large group of patients have no explanations, and apparently fail to take their medicine due to forgetfulness or through indolence. In this last group of patients unless the irregularities had been specially looked for, their occurrence would not have been suspected as great majority of them keep up the social side of the relationship with the clinic and attend regularly.

Unfortunately very little is known of the motives, which impel a patient to take medicine and the best way to get him to do so. In essence, in order to make a patient to take medicine regularly morning and night for a year it is necessary to establish a new pattern of behaviour; and this many of the patients find difficult. If the irregularity in self medication is small and does not influence the outcome it does not matter but if the evidence suggest that the irregularity carries serious consequences then i) Find a way to make patient regular in taking their medicine. ii) To alter our out look on the ideal form of home treatment. iii) To study regimen given daily or intermittently under direct observation.

Many of the problems of TB control are more human than technical, involving factors on both sides of the equation, representing the relation between the provision and administration of control measures, on one side, and the acceptance of such measures by the general population, on other. The present study identifies some of these behavioral factors on the basis of an analysis of the relation between the TB control program and local health behaviour in one low-income rural county in eastern Kentucky, USA, where TB death rates are still twice the national average.

Certain behavioural variables (cultural, social, psychologic, physiologic and physical environmental) impacted every step of the TB control process, from case finding to treatment and follow-up observation. Fundamental economic problems were found, both in the limited funds for health programs and personnel and, in the chronically depressed local economy that fostered low standards of living. In addition, the characteristic pattern of health behaviour proceeded from denial or acceptance of symptoms, through reliance on home or patent remedies or faith healing, to only partially accepted modern medicine. Therefore, it was determined that those aspects of TB control (the TB tests etc.) which required the least personal effort, the least modification of culturally sanctioned beliefs and the fewest rearrangements of customary social relations were most likely to be accepted and vice versa.

The methods of measuring the dynamics of behaviour of the tuberculous patient, the social consequence of a TB case in the family and neighbourhood or the economic burden of the disease to the nation is still in the embryonic stage. Negative reactions from family and associates could lead to the patient's denial of having TB, thus endangering the patient and the community. Since the NTP came into being, TB patients can expect a correct diagnosis and prompt treatment. As the patient's interest in treatment will decline when suffering is reduced, it is urged that the patient be motivated (preferably, at the start of the treatment regimen) to acquire a compulsive, obsessive, daily habit for drug consumption for at least a year. As the social security measures in the country are meagre, domiciliary treatment rather than institutionalization should be offered to reduce the extent of disruption to the economic and social life of the patient.

Another important area of concern is the measurement of suffering. With the revolutionary changes in the treatment of TB, the prior acute, physical suffering and mental agony of the TB patient has given way to a generalised form of distress. Using behavioural techniques such as group interviews of the patient amidst his/ her family and projective techniques will provide a thorough knowledge of the personality, values, expectations and social interactions of the TB patient. This knowledge could help explain why patients fail to avail diagnostic and treatment services offered to them and, enable the NTP to continue the felt-need oriented approach.

A medico-social study was conducted at the New Delhi TB Center to determine the factors involved in late diagnosis. A total of 400 new patients attending the Center from three different territories, were interviewed for information on the duration of symptoms and remedial action taken by them before reporting at the Center. The resulting data were then correlated with the clinical and bacteriological status of each patient to ascertain the consequences of late diagnosis for the patient. The results, based entirely on patients' narrations, indicated that patients' late visit to the Center was because of late diagnosis or referral. A concerted effort is necessary to promote awareness of TB among the general public and to ensure that GPs and General Health Institutions suspect TB early and diagnose or make referrals early.

The study investigated the family background and other socio-economic factors in TB patients as well as the personality pattern and frequency of depression among them. The sample was drawn from the out-patients' clinic of TB and Chest Diseases, S.R.N. Hospital, Allahabad, during February-March 1978 and was restricted only to proven cases of pulmonary TB. A control group of an equal number of cases undergoing treatment for long-term fever of any etiology except TB, was selected from those admitted in the same hospital, after matching age, sex and economic status. First, detailed information concerning the family background and behavior pattern was obtained through a semi-structured interview. Subsequently, the subjects were administered the Hamilton Rating Scale for Depression (1966). Depression was observed in 32 of the experimental subjects in comparison to 7 of controls. Test results also indicated significantly high scores on the Hamilton Rating Scale for depression among experimental subjects.

A study on awareness of symptoms of pulmonary TB and action taking was repeated in the 62 villages and 4 town blocks of Tumkur district of Karnataka after an interval of 12 years. In the earlier study, 2106 persons formed the study population. In the present study, 1752 were intaken to obtain a comparison of these 1752 intaken persons who were eligible for interview, 875 were X-ray positive and 877 X-ray normal (matched control).

The study showed that 95% of patients having radiologically active TB by both X-ray readers, 70% by one reader, 49.5% inactive by both readers, were aware of symptoms. According to the bacteriological status 79.5% had symptoms among those who were sputum positive by both microscopy and culture, 62.2% among those positive by culture alone and 73.7% among patients sputum positive by any method. Regarding action taking it was observed that 49.5% of the bacteriologically positive patients took some action compared by 70% of those found to have radiologically active disease by both X-ray readers. Thus, action taking was higher among the latter category in both the studies. It may be due to the fact that extent of lesions are less advanced among those bacteriologically positive than among those who were in radiologically positive stage.

The findings of the study are similar to the earlier awareness study carried out in 1963 in the same area (Tumkur). This also indicates that in spite of having advantage of DTP for a decade actual and total benefits have not reached the people.

NTP reaches people through PHCs and sub centres. A study was conducted to find out the perception of illness and utilisation of health facilities by the community. This study was conducted in a random sample of 48 villages selected according to Probability Proportioned to Size within 5 kms. of the selected PHIs in Kolar district using a multi stage sampling technique. Information on socio-economic status, availability of health services and their utilisation was collected. 13,323 individuals were interviewed. 706 were ill in a period of two months prior to survey. 71.3% had taken allopathic system of treatment. 69.1% had approached government hospital or PHC. 34 patients reported to have TB. All had attended either DTC or PHC.

The study indicated that morbidity was perceived much early and also followed by an action. Data indicates a high percentage of preferring allopathic system in general and from peripheral health centres and other government hospitals in particular. Data indicates that in spite of overall backwardness of the study area and very limited economic resources people have utilised the PHC to the maximum. The reason could be either high acceptance of PHC or inevitability. But, there is an evidence of higher utilisation of family welfare and MCH services. The data shows all TB patients have had exposure to standard regimens, all of them have approached either PHC or DTC for treatment. This confirms the felt need oriented concept of NTP. Also high level of morbidity among children below 4 years of age and action taken indicate an enhanced level of demand for health services.

The research study was an extension of a prior study (Anderson & Banerji, D., 1963) that undertook a one-year follow-up of 784 patients who were diagnosed at the clinic of the State TB Demonstration and Training Center, Bangalore. The study sought to determine, over a three-year period, how the pattern of drug collection among the above patients related to the findings about their bacteriological and sociological status.

This report contains a summary of the material and methods used in the clinic followed by detailed descriptions of the bacteriological follow-up of the patients, the significance of the radiological findings for the initial diagnosis and follow-up of patients and, the methods of sociological investigation. The results of the data analysis are also described in detail. The conclusion drawn from the research was that when TB patients, who actively sought medical help, were offered facilities for drug collection within a reasonable distance from their place of residence and when a "skeletal" organization was made available to supervise the treatment of these patients, it was very unlikely that the patients would continue to suffer from TB without availing themselves of the treatment facilities.

A socio-epidemiological study was undertaken by the NTI on out-patients attending the LWTDTC at Bangalore to understand the main reasons why people attended TB diagnosis and treatment centers so as to know why they default in treatment subsequently. During February-May 1966, a 50% random sample (comprising 2,653 persons of which 1% of the interviews were rejected) of the new out-patients attending the TB Center for diagnosis were interviewed by experienced social investigators before their X-ray examination. Eighty-three percent of the out-patients came from the city while only 17% came from the rural areas.

While a number of sociological characteristics such as profession, religion and literacy were found not to have any significant relationship with the patients' attendance, distance from patient's home to the city TB Center proved to be crucial. Further analysis of the data suggested that even in a city, a majority of the persons with symptoms first contacted, for treatment, the nearest health institution which typically happened to be a general health institution. This delayed early diagnosis or referral. Of those patients who subsequently attended the city TB Center, 37% had not received any treatment for TB from the general health institutions, 50% got non-specific treatment and only 13% got likely or definite TB treatment. Nineteen percent who did not have TB also got likely or definite TB treatment. It was clear that a very complex and multi-lateral relationship existed between the symptomatic patients, the institutions of general health and the established specialized services. Sociological or operational studies to examine this "complex" were suggested.

A study was conducted at the NDTC to study 450 patients who included 225 patients who were non-cooperative in treatment. The patients were interviewed by six students from the Delhi School of Social Work and data on the patients’ socio-economic background, the period of treatment until they became irregular (those who failed to visit the clinic twice or more after repeated attempts at retrieval) or non-cooperative, their diagnosis, status at the time of their irregularity or non-cooperation, and the patients’ reasons for irregularity or non-cooperation, were filled in uniform schedules. The results and the major reasons for the patients’ irregularity and leaving treatment are presented. Measures to minimise patients’ default in treatment are recommended. Some supplementary remarks and suggestions on this study are presented by S.P. Pamra in the report on the 20th National Conference of TB and Chest Diseases Workers, Ahmedabad, India, Feb. 1965, p. 225-230.

To understand the reasons for TB patients’ default in treatment behaviour, data available at the Rajendra Nagar TB Clinic, Lucknow, from patients registered during 1964-66, were analysed. 3,609 (43%) cases out of 8,374 patients proven to have pulmonary TB were given treatment. The particulars and behaviours towards treatment, of these patients, is described. Initial and subsequent defaulters were reminded to resume treatment through: 1) a personal appeal posted to the defaulter (Type 1 action), 2) a local community leader or the head of the office was requested by post to persuade the patient (Type II action), 3) a member of the staff personally contacted the patient (Type III action). Default was not associated with gender, distance or severity of TB. Retrieved patients’ versions for possible causes of default were more reasonable than those who did not come back to treatment. Some suggestions to reduce default are offered.

A two-year follow-up study of treatment default among 193 patients with pulmonary TB, who were receiving domiciliary treatment in a Delhi urban clinic, revealed that the percentage of defaulting (that is, collecting drugs for less than 10 months) fell from 57% to 44% when the duration for calculating drug collection was raised from 12 to 24 months. The propensity to default appeared to be inversely related to the precision of diagnosis and the extent of lesions. While the default rate was 20.2% among those who were initially sputum positive, it was 100% among those sputum negative cases who had only minimal radiological lesions. This study, thus, questions the rationality of assessing the performance of a TB clinic on the basis of the ‘traditional’ definition of a defaulter. It has presented data to make a case for a more precise definition of a defaulter by offering a longer period for calculation of drug collection and by stressing the need for greater precision in diagnosis of cases who are put under treatment.

To solve compliance problems, they must first be detected by identifying patients who fail to keep appointments, identifying treatment failures, and identifying less overt forms of non-compliance by interviewing patients and performing pill counts and urine tests. To improve compliance, simple, specific instructions about the behaviour desired, must be given. If problems develop, the patients should be heard and obstacles to the desired compliant behaviour should be identified. The regimens to overcome these obstacles must be restructured and the support of family and friends elicited. Behavioural strategies such as verbal encouragement, tailoring, incentives, awards and contracts must be tried. Supervised therapy must be used whenever non-compliant behaviour persists. Institutionalization should be avoided whenever possible, but used if no other options remain. There are several methods of detecting non-compliant behaviour and a growing list of validated ways of improving compliance. Their judicious use can help prevent the additional cost, morbidity and mortality inevitably associated with poor compliance.

This study was undertaken to determine the number of patients who started anti-TB treatment at the TB Centre in Addis Ababa, but never completed a full regular course for one year. There were 460 or 6 percent of all the TB patients that were treated for the disease in this period. The reasons for treatment failure were analyzed. Although the commonest cause of default was clinical improvement before completion of therapy, many of the reasons related to the socio-economic situation and cultural background in Ethiopia. Despite defaulting, there was sputum conversion to negative in 85 percent of these cases, which is a good result for unsupervised TB chemotherapy, in a country such as Ethiopia.

From September 1988 to February 1989, 52 compliant and 50 non-compliant TB out-patients who were prescribed anti-TB drug regimens were interviewed in Wardha District, India. Patients were compared by means of a questionnaire with previously fixed response options in order to identify the factors which were responsible for compliance and for non-compliance. Discriminant analysis demonstrated differences between completers and non-completers on several health belief items, in particular, those regarding health motivation, the perceived severity of the disease, costs and benefits of the treatment regimen and self-efficacy. Compliers reported more physical symptoms at the onset of the disease, whereas more non-compliers mentioned a deteriorated health condition at the time of interviewing. Low associations were found between demographic and socio-economic variables and adherence, except for some indicators of income level. The relationship between presence of social support and co-operation with the treatment procedures was confirmed. An indication of an educational problem was the association between the compliance behaviour of a patient and his or her knowledge of specific aspects of the disease, the origin of TB and features of the drug regimen. Satisfaction with the health care provider contributed positively to the continuation of drug intake.

The report provides an account of the research on patient adherence as it relates to the treatment and prevention of TB. It summarizes the literature on social and behavioural factors that relate to whether patients take anti-TB medicines and complete treatment and it suggests issues that require the attention of researchers who are interested in behavioural questions relative to TB. Several conclusions about measuring adherence can be drawn. Probably the best approach is to use multiple measures, including some combination of urine assays, pill counts and detailed patient interviews. Careful monitoring of patient behaviour early in the regimen will help predict whether adherence is likely to be a problem. Microelectronic devices in pill boxes or bottle caps have been used for measuring adherence among patients with TB, but their effectiveness has not been established. The use of these devices may be particularly troublesome for some groups such as the elderly, or precluded for those whose life styles might interfere with their use such as the homeless or migrant farm workers.

Carefully designed patient interviews should be tested to determine whether they can be used to predict adherence. Probably the best predictor of adherence is the patient`s previous history of adherence. However, adherence is not a personality trait but a task specific behaviour. For example, someone who misses many doses of anti-TB medication may successfully use prescribed eye drops or follow dietary recommendations. Providers need to monitor adherence to anti-TB medications early in the treatment in order to anticipate future problems and to ask patients about specific adherence tasks. Ongoing monitoring is essential for patients taking medicine for active TB. These patients typically feel well after a few weeks and either may believe that the drugs are no longer necessary or may forget to take medication because there are no longer physical cues of illness. Demographic factors, though easy to measure, do not predict adherence well. Tending to be surrogates for other causal factors, they are not amenable to interventions for behaviour change. Placing emphasis on demographic characteristics may lead to discriminatory practices. Patients with social support networks have been more adherent in some studies and patients who believe in the seriousness of their problems with TB are more likely to be adherent. Additional research on adherence predictors is needed, but it should reflect the complexity of the problem. This research requires a theory based approach which has been essentially missing from studies on adherence and TB. Research also needs to target predictors for specific groups of patients.

There is clear evidence on adherence, culturally influenced beliefs and attitudes about TB and its treatment. Therefore, culturally sensitive, targeted information is needed. A taxonomy of groups and their beliefs would assist in the development of educational materials. Educational interventions should emphasize adherence behaviours rather than general information about TB or treatment. Further research is needed to define the social and behavioural dimensions of effective treatment and control and, creative programming must take advantage of the latest research.

The study, a collaboration between the National Tuberculosis Institute, Hanoi, Vietnam and the Karolinska Institutet, Stockholm, Sweden, was carried out in a district of Quang Ninh Province in North Vietnam.

To describe TB services, attitudes of staff and attitudes of patients considered as defaulters to TB treatment.

Two focus group discussions were carried out with staff at the district hospital. Ten defaulter patients were interviewed in their homes.

This exploratory study has revealed some important aspects of staff and patients’ attitudes to TB and its treatment. TB is considered a ‘dirty’ disease, which mainly affects poor people. There is a tendency to avoid telling others about it. Obvious symptoms are explained as ‘being over-worked’. A patient with TB feels ‘less respected’ by others. The social stigmatization leads to delays in seeking medical care, often only after self-medication: anti-TB drugs can be brought without prescription in various pharmacies. The patient’s economic situation is also an important determinant of compliance and non-compliance. These factors need to be taken into consideration in TB control in Vietnam.

A study conducted in Cleveland, Ohio, is presented which explores the characteristics and rehabilitation problems of a metropolitan tuberculous population. The study was based on a random sample of 384 adult Cleveland city residents, drawn from the TB medical case register. On the basis of the findings, four sub groups of patients were identified. Three of these-the “family isolates,” the “anomic”, and the “otherwise ill”-were shown to be highly disadvantaged socio-economically, and to have especially reduced potential for successful rehabilitation. The fourth group-the “normals”-were also disadvantaged, but had much higher rates of successful rehabilitation. The problem of unemployment emerged as one of the most serious besetting the tuberculous patient. The patient’s age, lack of previous skills, the stereotyped image of the tuberculous and contemporary theories of work suitability frequently militated against his/ her successful rehabilitation. Recommendations include changes in the institutional structure to provide a more supportive institutional environment for the patients and, provision of basic skills in conjunction with a program of specific vocational training.