India has certainly come a long way forward in its response to providing access to standard WHO recommended anti-TB treatment through Directly Observed Treatment Short course (DOTS) to more than 14.2 million (1.42 crores) people across the country. Yet TB continues to remain one of the key public health priorities in India with Multi Drug-resistant TB (MDR-TB) becoming a major concern.
The Revised National TB Control Programme (RNTCP) has recognized this public health threat and has laid out a well-thought national strategic plan to fight TB and MDR-TB and envisions providing universal access to quality diagnostics and treatment services for all patients with MDR-TB in the next five years. As the programme continues to expand there are major opportunities for improving programme outcomes by evidence-based approaches and innovations in areas such as early case finding, rational drug use, public private partnerships, multi-level counselling, and social support, among others.
All this was brought out clearly at the Continuing Medical Education (CME) programme on MDR-TB organized recently by St Stephen’s Hospital, and Indian Public Health Association (IPHA) Delhi Chapter at St Stephen’s Hospital, New Delhi. This CME covered the science of preventing, diagnosing, and treating MDR-TB; impact of community-centric approaches; counselling and also experiences of those presently seeking care and cured TB patients.
Dr Amod Kumar, Head of Community Health Department at St Stephen’s Hospital (which was founded in 1885), and the leading spirit behind this CME, had met Dr Syeda Hameed, Chair of Planning Commission, Government of India, earlier in July 2013 to stress upon the need to integrate counselling and social support mechanisms in programmatic management of drug-resistant tuberculosis (PMDT) in India. These two components are indeed vital for the success of any TB control programme. This has been ably demonstrated by evidence-based approaches and innovations as shown by St Stephen’s Hospital and other institutions.
Professor Sanjai Bhatt from the Delhi School of Social Work, Delhi University feels that treating a ‘dis-ease’ (including MDR-TB) should result in bringing ‘ease’ to the patient—mentally as well as physically. Proper counselling of the patient and care givers can reduce adverse socio-economic impact of MDR-TB to a large extent. Social isolation and neglect leads to more difficulties in treatment and, according to Professor Bhatt, should be tackled by professional counsellors working as a team with the doctors. Proper counselling also helps to reduce the deeply entrenched gender based inequalities that continue to put multiple levels of burden and impact women adversely.
The Home based Care, an innovative project of the Community Health Department of St Stephen’s Hospital, proves beyond doubt that proper counselling of MDR-TB patients and their care providers can dramatically improve treatment adherence and cure rates of MDR-TB patients. The project with support from United Way Worldwide and Lilly MDR TB Partnership, aims to provide specialized home-based care to 272 MDR-TB patients; to educate patients and families on MDR-TB prevention, diagnosis and treatment related issues; to provide counselling support to these patients and their family members with a view to improve care of patients at home. The counselling teams which go to the homes of MDR-TB patients are skilled in providing home-based nursing care, counselling, help with socio-economic issues related to TB and MDR-TB, infection control and recording and reporting systems.
Dr Joyce F Vaghela of the Community Health Department informs that, “The counselling teams (each team consists of one female and one male counsellor) visit MDR-TB patients at home every fortnight during Intensive Phase of the treatment (total 12 visits) and every one and a half months during Continuation Phase of the treatment (total 12 visits). The first visit is very long when all the family history of disease as well as other information is sought. We tell them about the side effects of drugs that can occur and also ask in detail if they are facing any of them. The patients have the phone numbers of our team members and they can call them any time. If the patient needs medical attendance, we inform Dr Khanna of Lok nayak Hospital and/or Dr Anuj Bhatnagar of Rajan Babu Institute of Pulmonary Medicine and Tuberculosis and the patient is sent there and attended to, even out of turn.
We take a real interest in their problems and give them love and care. Sometimes it requires a lot of encouragement for them to go to the centre every day for their medicines. Some times their family members are scared to take care of them for fear of contracting the disease. So we counsel them as well on infection control methods to be followed at home to prevent spread of the disease—use of masks by patients, cough hygiene, sputum disposal methods (burying it or heating it on fire and then disposing it). Taking care of the adverse side effects of medicines plays a very big role in restoring patients’ confidence and ensuring treatment adherence. There are over 50 children who have MDR-TB and have had to leave their studies in between. They are counselled in a special way to encourage them to resume their studies once infection free. In some cases we provide patients with high-protein diet supplements and help them with livelihood options which could be in the form of linking MDR-TB patients to vocational training or providing them with some equipment or arranging working capital to re-start their business.”
In the 1st phase of this project an impressive 70% of the MDR-TB patients were cured. Dr Vaghela, attributes this high rate of success to the care and advice provided to patients by the dedicated counsellors who make a very good rapport with the patients.
Dr Bandita SenGupta, Project Manager, CARE India stresses upon the continuum of counselling and care to constantly motivate MDR-TB patients at every level. She agrees that counselling should be regular and given by all those involved with patient care and treatment and not just by the appointed counsellors. DOTS providers must know counselling techniques as they are the first point of contact for MDR-TB patients who then see them daily for 2 years. Counselling is a team work and should make the patient feel that he/she has some support and is being cared for.
She informs that, “We have 5 trained counsellors for 8 districts supported by Eli Lilly. As the number of counsellors is very less we use mobile phone services to remain in touch with our patients 24x7 hours. Each patient under our care has the phone number of the counsellors and the patient is assured that he/she can call anytime and their problem will be promptly attended to. This assurance alone boosts their morale. In many instances just a phone call has saved a life.”
Dr Rama Bhatt, Chief Medical Officer and In-Charge, Ramakrishna Mission Free TB Clinic, Delhi, voices similar sentiments. She informs that her TB Clinic has served as the RNTCP District Centre for Karol Bagh (in Delhi) since 1998. Currently it is serving a population of 4 lakhs through 4 Designated Microscopy Centres and 9 DOTS centres. The clinic also provides treatment and care for MDR-TB patients and those living with TB-HIV co-infection. Of the 38 MDR-TB patients whose treatment outcome has been declared since 2008, 27 have been cured (cure rate of 71%).
Dr Bhatt attributes this high treatment success rate, amongst other things, to the excellent counselling provided to the patients and their family members by the clinic’s staff. They are told about all possible problems related to treatment adherence, and drug toxicities and above all not to lose hope. Even small problems are given a patient hearing. Community based DOTS providers have been appointed for patients who find it difficult to come to the DOTS centre every day for their MDR-TB medicines. To make daily drug dispensing easier and faster for patients the clinic puts daily doses in polythene pouches for MDR-TB patients and keeps them in the ‘box’ of MDR-TB drugs for a particular patient. This makes daily drug dispensing and doing DOTS easier and faster. Keeping address slips of patient to keep track of them and maintaining outstation visit records of patients (to give them their medicines for the period of time they are away) are the other two innovative ways practiced here. The MDR-TB home visit team of St Stephen’s Hospital also keeps in touch with Ramakrishna Mission staff and visits MDR-TB patients who need home support. This home-visit team has been especially helpful in bringing MDR-TB patients who had left the treatment back into the programme.
There is still a lot of stigma attached with the disease especially in case of female patients. They are generally dependent on others to take them to the hospital for diagnosis and treatment\and are often deserted by their family. So, counselling needs of female patients need much greater attention. There should be enough female counsellors to meet the unique counselling needs of women. Regular home/hospital based counselling, during the entire treatment period, that addresses stigma and discrimination issues also is bound to give positive results. More NGOs and private public partnership models should be utilized to strengthen home based care and counselling support for MDR-TB patients.
October 2013
(The author is the Managing Editor of Citizen News Service - CNS. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, violence against women and girls, and MDR-TB. Email: shobha@citizen-news.org, website: www.citizen-news.org)
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