A case study on tuberculosis treatment defaulters in Delhi: Weak health links of the community with the public sector, unsupported migrants and some misconceptions

Background: Defaulters are producing the challenging, daunting category of drug resistant cases. It is important to examine and understand the patient’s notions and terms to manage them effectively. Objective: To study the reasons behind failure of adherence to treatment and to assess the health care seeking behaviour with awareness of these patients regarding the public sector provisions. Materials and Methods: In depth interviews with ten patients who had defaulted and were undergoing CAT-II treatment which included both retreatment defaulters and new defaulters, were conducted by repeated contacts in Fatehpur Beri PHC DOTS centre. Results: People refuse to seek treatment from a government health centre when they fall sick seriously as they are ready to get treated at any expense and seek private health care facility for the prompt treatment. There is a notion that free service from public sector is not as effective as private corporate hospitals. In the public sector patients defaulted because of side effects of drugs, fear of getting admitted in big tuberculosis (TB) hospitals, incompatible timing, neglect, long waiting time, TB deaths in the family and lack of family support. Among migrants, lack of employers support, family support forced them to return home. Ignorance about existence of DOTS centre with free treatment was observed. Most of the patients were unaware that incomplete treatment could lead to disease. Misconceptions observed were that treatment was futile (talk in the community about drugs being useless) and most of the patients were afraid of the disease and thought they could die because of it. Conclusion: Proposed measures include: Recognition of traditional medicine/complementary alternative medicine practitioners for universal access to TB diagnosis and care, Public sector should be made attractive to the middle class society through enhancement of services and user fees and empowerment initiatives for lack of social support of the migrants.

Keywords: Adherence to treatment, DOTS centre, health care seeking behavior, migrant

Despite decades of intense drive two deaths occur every 2 min from tuberculosis (TB) and 750 deaths every day. ^[1] The drug resistant cases threatens to undermine the program at various levels. At one level there is the difficulty in treating the cases and on another level is the misconceptions in the community following the experiences of failure resistant cases in the neighbourhood which is a major threat to the program. In the present scenario of universal access to TB care ^[2] and TB declared a notifiable disease, ^[3] a look into the challenges faced by the ones struggling to complete the treatment would provide a better view on constraints, weakness and scope for improvement in access to care. This study examines the reasons for default, health care seeking behaviour and the awareness regarding the disease, treatment with misconceptions. There is a dearth of qualitative research on TB defaulters.

This is a qualitative study. In depth interviews with ten Patients who had defaulted and were undergoing CAT-II treatment, were conducted by repeated contacts.

An interview guide which outlined the areas in which the patients were interviewed was used. The first part contained questions related to their socio demographic factors like age, sex, address, whether a migrant or not, education, type of family, whether presently working or not, if not working the reason for not working and the employers approach. The second part consisted of details about the symptoms of the disease and the health seeking behaviour. Whom they had seen first and where else they sought treatment. The type of treatment received was understood by asking questions related to the investigations done and the information imparted to the patient regarding the disease and the treatment. Question was also asked if they were told why they should complete the treatment and that incomplete treatment could lead to the disease. The third part consisted of questions related to their awareness about the disease like if they knew that they could spread the disease, their knowledge about the existence of DOTS centre and if they knew that treatment was free. Their attitude towards the disease was captured with questions like if they were afraid of the disease and if they hid the diagnosis from others. The final part consisted of question related to the reason for default.

Analysis was done by the open coding system using  Atlas ^{More Details}-ti. Comparisons were made leading to a summary of the details collected.

The demographics of the sample are as in [Table 1]. All of them were adults belonging to the productive age group of 20-55 years. The sample was an equal mix of migrants and natives, almost equal mix of nuclear and joint family system and again half of them were illiterate and the other half had education at least till the middle school. The occupation of the patients varied from being just a house wife to a casual labourer involved in hard work like digging, road work and load men.

Reason for defaults

From this study sample it suggests that financial constraints due to treatment sought in private sector to be one of the main reasons for default.

The terms or notions of the patients not to seek public sector care in the face of severe illness are.

Best treatment available

Lack of money to continue treatment was found to be the most common reason among migrants as well as nonmigrants. A sense of well-being after 2-3 months of treatment coupled with huge expenditure in private health sector seemed to be a valid reason. This is illustrated by the following case:

Visceral leishmaniasis (VL) was diagnosed to have TB in a Government Tertiary Care Hospital in Delhi. Being a migrant for want of psychological and physical support, when his condition became very bad he moved to his native and began his treatment in a private hospital there. He was supported by his extended family financially (his grandfather sold his goats). It cost him about Rs. 10,000 for the treatment of about 1 week. Later he had treatment from a private doctor for about 4 months. He stopped treatment after about 4 months as he was feeling fine and he could not afford the drugs. “I am prepared to give my life even, to save my son as he is the only one I have, I want the best of treatment for him and that is why I chose the best private hospital in town for my son” Mother of VL said.

Lack of money becomes a constraint because of the health seeking behavior of the person. Irrespective of the class of the patients they want the best treatment available which pull them to the more flashy and comfortable private corporate sector.

Fear of public tertiary care hospital

In the tertiary care public sector TB hospital, the site of chronic ailing patients and patients in the end stages, instills fear among the patients. Moreover, the waiting time involved leads to confusions in the patients. Patient is moved from public sector to private sector and then again back to public sector for want of money where the neglect drives him/her once again to private … swinging precariously back and forth. This is illustrated here:

SR is a TB patient who had been diagnosed with empyema. He was first taken to tertiary care government hospital where he supposedly was neglected and remained admitted in the ward with no treatment done. Then they shifted him to private hospital where ICD was done and he was started on ATT. In the private hospital they were not able to pay the due amount and hence they were told to take him to tertiary care government hospital again. There he saw that some patients had been admitted in tertiary care government hospital even for a year and he feared the hospital admission there. Therefore he left the government centre once again and started taking medicines from private hospital.

Hot drugs

One of the reasons noted for going to alternative system of medicine was the belief that allopathic drugs are “hot”. This is illustrated by the following case:

SV had problems of fever, weakness and cough during her last pregnancy. During her pregnancy she came to the PHC DOTS center for treatment. But then she discontinued the treatment as she was told allopathic drugs are “hot” for the body. She approached a private health practitioner practicing alternative medicine and was given drugs for the fever and cough, she felt all right with it for some time.

Nobody to take care of my shop

Incompatible timing to receive treatment because of the profession was found to be a reason. This was found in a case of a vegetable seller who defaulted because there was nobody to take care of his shop when he came for treatment.

Health seeking behavior

Most of the patients had complaints of fever, cough, weakness for more than a month for which they sought care. They had approached either the Registered Medical Practitioners (many of them are TMP/CAMPs) private qualified doctors, PHC medical officer or Regional hospital. The common route taken by the studied patients who belonged to the lower socio economic status is visit to various RMPs before finally getting referred to the government run health care provider either by the RMP them self or by a friend or relative. This is well illustrated by this case:

MT a 50-year-old male, native of Delhi, is a Safai Karamchari with Delhi Corporation. He lives in the PHC DOTS center area in a joint family. Moti gets a salary of around Rs. 8000/month and has a percapita income of Rs. 1500. He had sought treatment for fever and cough from a “government cum private practitioner” – a government doctor who did private practice. Moti’s wife and other family members wanted to get him treated at any cost. His wife had taken him to the above doctor since he was known to be good and hence despite the distance and money they took Moti to him. He was given around 30 injections and they spent Rs. 15,000-20,000 on his treatment which lasted for 3 months. He had taken medicines on alternate days and there were four drugs. No sputum check was done. However X-ray chest was done twice. But he found no relief with the treatment and had to stop it since they could not pull through because of financial constraints.

The line of treatment followed by the private health care practitioners indicates disarray in the system of diagnosis and treatment. Inspite of being in the government sector this provider was seen to stray away from the routine protocol of diagnosis. It was found that the private health care practitioners are mostly the TM/CAMPs in the jhuggis.

State of migrants

Employers approach

While some could continue working along with the treatment others had to stop working because of the disease and employer’s approach to it. One patient was refused work by his employer after he came to know that he had TB. An example of good employers approach was illustrated by this case:

JD a 20-year-old male migrant labourer who works in a farmhouse. And lives in a jhuggi close to the farm. His housing and food expenses are borne by the farm house employer. He had defaulted treatment in Jhansi about year ago. He had sought treatment from a private doctor who runs a X-ray TB clinic. X-ray chest was done and he was told that he had a “chala” in his chest. He claims to have taken treatment for 3 months. He stopped taking the drugs because he became all right and also because he did not have money. He developed cough and fever again. The supervisor of the farm in which JD’s parents were working told him over the phone to come over to Delhi and that he could avail free treatment from here along with working in the farm. The supervisor of the farm is his guarantor and he says that JD will be supported to complete his treatment even if his health does not permit him to work.

This is in contrast to the plight of another migrant:

RV, a 40-year-old male, native of Bihar, illiterate, living with his sons, who have been working as casual labourers. Ramdev who himself was a casual labourer has not been able to work for the last 1 year and his children have been running the family. He failed to adhere to the treatment because of family obligations. He had to go to Bihar as his sister had passed away and also he helps his family out with agricultural work during farming season.

Familial obligations, farming seasons

Even though diagnosis has been made and they have been convinced about the importance of completing treatment and are aware of the hazards of discontinuing treatment lack of physical and mental support drives them away to areas where programme support is not available.

Awareness about the disease

Information dimension

Awareness regarding the diagnosis of TB disease, treatment details, told why to complete treatment and that one could get disease in case of incomplete treatment were present among patients who approached the PHC and the regional Hospital. While those who approached the RMPs were not updated about their status and one of them was given around 20 injections for a bout of hemoptysis and was not given any other information. A surprising observation was that most of the patients did not know about the DOTS center and that drugs were free at the centre before they got to the centre. Only three out of the ten knew about the presence of the centre from posters and that drugs were free, from TV and radio. All of them were aware now that they had taken incomplete treatment and need longer treatment.

Misconceptions

Most of them were afraid of the disease and of people knowing about the disease. Reasons given for fear of others knowing about the disease are the marriage prospects in case of the youngsters and the stigma attached to the disease. However, except for one woman others did not try to hide the disease. Their knowledge regarding TB is that it is a deadly disease and one could die from it if untreated. TB, when familial, especially with death of a family member leads to repeated defaulting in the face of no information available on drug resistance. The belief that treatment is futile exists. This is illustrated by the following case:

SV, a 24-year-old female, native of Delhi, a house wife living with her husband. Her husband is a TB patient who had been diagnosed with empyema and is on irregular treatment from the private sector. SVs father in law died of TB. He was an alcoholic and he had defaulted from treatment in DOTS center. SV believes treatment could be futile and they could still die from TB despite treatment.

Other misconceptions noted about the disease are that there is no treatment for the disease and so there is profound fear of the disease. Also the belief that this disease requires strict isolation and that they cannot not share food, clothing and a room with others is upsetting. The health care provider themselves are unsure about the degree of isolation that a patient requires leading to further aggravation of the patients mental condition.

Though reasons for default observed in this study are to an extent similar to those of other quantitative studies done in India, ^[4],[5],[6] the overall results are more in keeping with the qualitative study done in Delhi. ^[7] The disarray in the system of diagnosis and treatment of TB patients in the private sector was noted to be the major obstacle towards expansion of RNTCP. ^[2] Diagnosis and treatment of TB has been observed to be uncoordinated and inconsistent because many patients initially receive TB care through the large private health-care sector, pharmacies often sell anti-TB drugs over the counter, and TB notification requirements are not enforced routinely. ^[2] Virtually no study on the role of the first point of contact of the masses namely the TMP/CAMP’s was found. Though role of NGOs and PPs have been dealt with in ensuring that free high-quality RNTCP drugs reach the masses specific studies on role of TMP/CAMPs was found. While for public health accountability and to be maximally effective, highly accessible and acceptable to patients the TMP/CAMPs role has to be clearly framed. Recognition and regulation needs to go hand in hand. The grant in aid for the NGO’s and Private practitioners is the existing incentivised program for the private sector to conform to RNTCP. ^[8] But a study done on health care practitioners (TMP/CAMPs) in a village in Delhi showed that none of them were involved in the national programs. ^[9]

Tuberculosis is a disease which affects a person profoundly at a physical and mental level hence demands greater support at those levels. The data indicated, as in a previous study done in Delhi, ^[7] supports patients needs to be both practical and emotional. But what support means to patients, how and where they obtain it in their households and communities has to be well understood. This study shows that familial support is the most important form as is evidenced by the unsettling and movement of migrants back to their villages following the illness. Systematic reviews and extensive programmatic experience demonstrate that there is no single approach to case management that is effective for all patients, conditions, and settings. ^[10] Consequently, interventions that target adherence must be tailored or customised to the particular situation and cultural context of a given patient. ^[10] Treatment support measures, and not the treatment regimen itself, must be individualised to suit the unique needs of the patient. ^[10] These observations are in congruence to observations in this present study. Except for one person none of the others mentioned the side effects of drugs as disabling and it was the support measures that were given importance by the patients.

However migrants as a group must receive customised treatment. Empowerment initiatives at their place of work as a supportive measure is required. Continuity of treatment in the eventuality of travelling back to their homes for familial obligations or other reasons could be maintained through the strengthening of registry system (Health Management Information System) at least at a district level. It was seen in this study that patients quietly defaulted if the referred DOTS centre is far away. A good mapping system to be able to identify the nearest centre is essential at the regional and district level centres.

Experience of migrants highlight the difference in the program performance in urban and rural areas. Migrants on small jobs in the city take drugs for 2-3 months until they feel better and then are beckoned to the rural areas by familial obligations or farming seasons. The situation worsens in the rural areas and they get back to the city. Migrants have been found to be a sizeable proportion of defaulters. ^[11] To have routine mechanisms and strong referral linkage system in order that migrant populations have access to seamless RNTCP services is envisaged in strategic vision for TB control for the country. ^[12] Continuity of Care of migrants is of utmost importance as has emerged out of this study which is in keeping with studies which have highlighted their conditions. ^{[5],[6],[7],[11]}

Besides increasing the visibility of TB programs in the community, which may increase knowledge and improve attitudes towards TB, ^[2] an important message to be conveyed to the community has to be concerning drug resistance and the treatment available. Patients who think that they could die even after taking full treatment, community beliefs of rising trend of multi drug resistance, is a moral threat to the program. Intensive IEC to counteract these beliefs are essential.

Proposed measures include: Recognition of TM/CAMPs for universal access to TB diagnosis and care. Public sector should be made attractive to the middle class society through Enhancement of services and user fees. Empowerment initiatives, for lack of social support of the migrants; use of technologically advanced services for proper referrals from regional centre to the appropriate most easily accessible local DOTS centre with providers. Intensive IEC campaigns on DOTS plus to allay fears of treatment failures.

I acknowledge the Department of Community Medicine, VMMC, New Delhi, India.

Source of Support: None, Conflict of Interest: None

DOI: 10.4103/1755-6783.146402

[Table 1]