https://doi.org/10.33698/NRF0280– Puneet Kaur, Sukhpal Kaur, Amarjeet Singh, Sandhya Ghai
Abstract
Background: Poor adherence by patients to anti-tubercular drugs contributes to the worsening of their TB problem. Relapse and treatment failure can harbor drug resistant mycobacterium tuberculosis bacilli. Objective: To explore the patients’ perspective about factors associated with loss to follow up, relapse and treatment failure among tuberculosis patients. Materials and Methods: This phenomenological study was conducted on 12 patients registered at DOTS centers, U.T. Chandigarh. A pre validated semi structured interview guide was used to collect the data. In- depth interviews were conducted. Audio recording was done following permission from the participants. Principle of redundancy was followed for data collection. Results: Based on patients’ verbatim, 12 themes were formulated. These were Factors contributing to relapse, Factors contributing to loss to follow up, Factors contributing to treatment failure, Physical problems related to disease conditions, Emotional stress, Stigma related to disease, Economic challenges, Job related challenges, Family support, Health care system related challenges, Attitude of DOTS Providers, Expectations of National Programme. Although medicines are provided free of cost but side effects of medicines and pills burden were the disabling factor in completion of treatment. Along with this, low socio-economic status, stigma related to disease condition, family liabilities, awareness issues, economic challenges, burden of losing income from work, poor communication between healthcare providers and patients, beliefs in traditional healing system contributed to non-compliance. Conclusion: The patients take their anti-TB medications under difcult circumstances and experience a wide range of interacting factors. This, in turn, has resulted for non-adhered treatment taking behavior by many patients. There is a need to initiate sustained efforts directed towards these patients to obtain a good success with TB treatment.
Keywords: Care givers; DOTS providers; Loss to follow up; Relapse; Tuberculosis; Treatment failure.
Correspondence at Dr Sukhpal Kaur Lecturer
NINE, PGIMER, Chandigarh.
Introduction:
Tuberculosis is a communicable, lethal d i s e a s e ( i f n o t t r e a t e d ) c a u s e d b y Mycobacterium Tuberculosis. The bacteria grow slowly and are sensitive to heat and ultraviolet light.1 The transmission of TB is inuenced by multiple factors like infectious status of patient, exposure, host factors and environmental conditions where patients live.2 Tuberculosis infects an estimated one third of the world’s population. Along with HIV, it is one of the leading causes of death from communicable diseases globally. Despite the availability of effective anti-tubercular drugs, TB killed 1.3 million people in 2012. The new infections occur at a rate of about one per second3. According to WHO global TB report 2017, in 2016, there were an estimated 10.4 million new TB cases worldwide. Seven countries accounted for 64% of the total burden, with India.4
In India, more than 40% of population is infected with Mycobacterium Tuberculosis. It is estimated that there are 2.5 million prevalent cases of all forms of TB disease. About 2.2 lakh of 85–90%.12 Lack of access to formal health services, traditional beliefs leading to self- treatment, loss of income, lack of social support, side effects, pill burden, lack of food, stigma with lack of disclosure, and lack of adequate communication with health professionals are some of the factors that can lead to loss to follow up in patients.13
TB relapse patient is one who has become (and remained) culture negative after receiving people die due to TB annually.5 The rst anti tubercle therapy but after completion of technical and operational guidelines for RNTCP were developed during the initial years of implementation of the programme and were therapy becomes culture positive again or has clinical or radiographic deterioration that is consistent with active tuberculosis.14 Risk updated in 2005.6 The goal of the national factors for relapse included drug irregularity, strategic plan is to achieve universal access of quality of TB diagnosis and treatment of all TB patients in the community.7
In India, under RNTCP, the percentage of smear-positive re-treatment cases out of all smear-positive cases is 24%.8 The causes of re- treatment include relapse of the disease after successful completion of treatment, treatment failure, and default in treatment. It is crucial for the success of the program and control of the disease in the country to nd out more about the reasons behind this.9
Loss to follow up in TB patients is a TB patient previously treated for TB for one month or more and who was declared lost to follow-up in their most recent course of treatment and subsequently found microbiologically conrmed TB cases. 1 0 Poor adherence contributes to worsening of TB situation not only by increasing incidence but also by initiating drug resistance. Resistance to anti-TB drugs has become a serious obstacle in the control of the disease. Patients’ poor adherence to anti-TB therapy, with an estimate of as low as 40% in developing countries, remains the principal cause of treatment failure globally.10 The WHO recommends at least 85% cure rate of all diagnosed TB cases.11 In order to achieve this cure rate, adherence needs to be in the order initial drug resistance, smoking, and alcoholism, shorter total duration of treatment (particularly Rifampicin), poor adherence during treatment (mainly during intensive phase), use of fewer than three drugs in intensive phase, greater disease severity and cavitations, high bacterial load, smoking, being male, the presence of concomitant disease, being underweight, and infection with HIV.15
Treatment failure is the presence of continued or recurrently positive cultures during the course of anti-tuberculosis therapy. Patients whose biological specimen is positive by smear or culture at the end of the treatment are considered at treatment failure. Various reasons for treatment failure Non-adherence, drug resistance, malabsorption of drugs, laboratory error and a few patients take a long time to respond as part of extreme biological variation.16
Objective:
To explore the patients’ perspective about factors associated with loss to follow up, relapse and treatment failure in tuberculosis patients registered at U.T. Chandigarh.
Material and Methods:
Phenomenological research design is selected to explore the lived experiences of loss to follow up, relapse and treatment failure tuberculosis patients’. This study was conducted at DOTS Centres in various health settings in U.T Chandigarh. Eight DOTS Centres were selected from 4 tuberculosis units, based on number of patients registered and population size to cover major part of U.T Chandigarh. Quarterly reports of patients’ census were collected from State TB ofcer, Sec 34 and two DOTS Centres from each TB unit were selected for data collection to cover U.T. Chandigarh. The data collection was done in the months of July -Sept 2017.
Purposive Sampling technique was used to draw samples. A pre validated semi structured interview guide was used to collect the data. In- depth interviews were conducted. Audio recording was done following permission from the participants. Principle of redundancy was followed for data collection. Patients who were not traceable and who had extensive dyspnoea were excluded from the study.
Ethical clearance for the study was obtained from the Institute Ethics Committee, PGIMER, Chandigarh and permission for data collection was taken from state TB Ofcer, RNTCP, Chandigarh. An informed written consent was obtained from the study subjects.
Data collection was done at the DOTS centres UT, Chandigarh. Patients were interviewed on DOTS day between 8 AM-2PM as they come to DOTS centres for their medicines. Quiet and separated room was selected to carry out in-depth interviews. Subjects were made comfortable and rapport was developed by asking warm up questions i.e. about their wellbeing and personal information. Interviews were recorded by using audio tape recorder. On an average, the time spent for each interview varied from 25-30 minutes. Typed written interviews were validated from the patients to verify their verbatims.
Analysis was done by using descriptive statistics and colaizzi’s steps for analysis which includes reading and re-reading of participant’s description, extracting signicant statements, formulating meaning for each statement, categorizing formulated meanings into cluster of themes, integrating ndings into exhaustive description of phenomenon, validating with participants and nal description into essence of phenomenon.
Results: Based on patients’ verbatims, 12 themes were formulated (Table 1). These were Factors contributing to relapse; Factors contributing to loss to follow up; Factors contributing to relapse; Physical problems related to disease conditions; Emotional stress; Stigma related to disease; Economic challenges; Job related challenges; Family support; Health care system related challenges; Attitude of DOTS Providers; Expectations of National Programme. Each theme was further divided in to various sub-themes to categorize the information more appropriately.
Description of Themes along with Verbatim of patients
Factors contributing to relapse
Addictions, occupational exposure, imbalanced diet, not following prescribed regimen and non adherence to medications were major factors contributing to relapse of tuberculosis.
One patient reported: “Ji kuch apni laparwahi se mujhe TB dubara hui hai. Mai drink karta tha, mai drink roj karta tha jab mai thik ho gaya tha tab mai smoking bhi karta tha.”(I got relapse of TB due to my carelessness, I used to drink alcohol daily when I was fine and I also smoke when i was well.)
Other patient said: M” era kaam kuch aisa hai jisme dust hoti hai , jab hum paper ki cutting karte hai toh uski dust udhti hai, usse mughe bahut khassi hoti hai, saas bhi fulta hai mera hosakta hai isse mughe TB dubara hogayi ho.” (At my work place there is lots of dust, when we do paper cutting there is lots of dust in surroundings. I get really bad cough because of this, I do get dyspnea as well. This may be the reason behind relapse of tuberculosis.)
One of patient reported: “Diet bhi ek reason hosakta hai dubara TB hone ka madam kunki mai akele rehti hu Paying Guest (PG) mai. Diet acchi nahi milti thi PG mai. Ab mai khud hi khaana banati hu apni salary mai khaane par hi kharch karti hu dhudh, eggs wagera leti hu. Pehle mai khaane par kharcha nahi karti thi.”(Diet may be one of the reason for relapse of TB, as I stay alone in PG. Diet is not good in PG. Now I cook myself and spend my salary on milk,eggs. Earlier I never spent on my diet.)
Other patient said: “Ji TB dubara hone ka reason yeh hosakta hai ki pehle jo maine dawai khaayi woh kam time period mai nish kar di thi. 6 mahine ka course maine 4 mahine mai nish kar diya tha. Time period jyada tha maine uske pehle hi course nish kar diya. Uske baad maine check bhi nahi karwaya, na hi koi test karwaya.”(The reason for relapse was I did not follow the due course of medicines, instead of finishing the course in 6 months I finished in 4 months. I finished the course of medicines much earlier than the due course. After that I did not get myself checked nor I underwent any test.)
Factors contributing to loss to follow up
Symptomatic relief, Too many tablets, Side effects of medicines and no relief of symptoms were major factors contributing to loss to follow up as per present study:
One patient said: “Mujhe laga ki mai theek ho gayi hu. Mera bhukhaar utar gaya tha, khassi bhi theek ho gayi thi, khaane peene ka bhi man karne laga tha. Phir maine doctor se pucha ki kya mai dawai chod du? Unhone kaha ki nahi aapne apna ilaaj pura karna hai. Phir beech mai ek doh baar meri dawai choot gayi aur maine dawai nahi khaayi. Mai apne aap hi dawai lene nahi li.(I thought I am fine now. My fever was down and cough was relieved, appetite was also improved. I asked doctor whether I should leave treatment in -between but he said that I have to complete my treatment. I missed my medicines once or twice and I did not take my medicines. I did not go to take medicines.)
Other patient reported: “Mera dawai khaane ko bilkul dil nahi karta tha.Mai 2 ya 3 tablet sai jyada nahi kha sakta. Itni saari goliya khaana koi asaan baat nahi hai. Pata nahi iss baar kaise khaunga nahi khaayi gayi toh phir dawai chut jayegi meri.”(I did not feel like taking medicines. I can’t take more than 2 or 3 tablets. It is not easy to take so many pills. I don’t know how will I take these many tablets, if I won’t be able to take medicines then my treatment will be incomplete again.)
One patient said: “Ji dawai khaa kar toh mai aur bimaar hogaya tha, pehle mujhe bhukhaar nahi hota tha. Dawai khaane kai baad tej bhukhaar hojaata tha, meri tabiyat jyada kharaab hogayi isilye maine dawai chod di.”(After taking medicines my condition got worse. Earlier I had no fever but after taking medicines I usually got high grade fever. I was getting sicker that’s why I left the treatment in between)
Factors contributing to treatment failure
Imbalanced diet, Addictions and Non adherence to medicines were major factors contributing to factors related to treatment failure.
One patient reported: “Diet bhi ek karan hosakta hai. Kabhi kabhi khaana chut jaata tha beech mai, kaam ki wajah sai khaana nahi khaa sakta tha time par, kabhi kabhi khaane ka mann nahi karta tha, bhuk nahi lagti thi mujhe shayad issi wajah sai treatment fail hogaya.”(Diet may be one of the reasons. At times I used to miss my food in between. I could not take diet on time because of my work pressure. Sometimes I did not feel like eating anything because of lack of appetite this may be the reason my treatment failed.)
One patient said: “Mai ilaaj kai chalte hue
Table 1: Themes and subthemes related to factors contributing to relapse and loss to followup
| Theme | Sub themes |
| I. Factors contributing to relapse | (a) Addictions
(b) Occupational exposure (c) Imbalanced diet (d) Not following prescribed regimen (e) Non adherence to medications |
| II. Factors contributing to loss to follow up | (a) Symptomatic relief
(b) Too many tablets (c) Side effects of medicines (d) No relief of symptoms |
| III. Factors contributing to treatment failure | (a) Imbalanced diet
(b) Addictions (c) Non adherence to medicines |
| IV. Physical problems related to disease | (a) Physical weakness
(b) Loss of efciency in doing household work (c) Difculty in taking care of children |
| V. Emotional stress related to disease | (a) Stress related to disease
(b) Repeat medication (c) Alteration in daily routine (d) Fear of not getting married |
| VI. Stigma related to disease | (a) Isolation of patient
(b) Avoidance of patients participation in social activity (c) Criticism from family members (d) Decreased traveling to relatives place |
| VII. Economic challenges | (a) Limited income sources
(b) Unemployment related to disease (c) Non affordability of balanced diet |
| VIII. Job related challenges | (a) Extra leaves
(b) Salary deduction (c) Fear of loss of job |
| IX. Family support | (a) Motivation
(b) Assistance in household work (c) Diet supplementation (d) Escort patient to DOTS Center (e) Financial support |
| X. Health care system related factors | (a) Proximity of DOTS Center
(b) Proper verication of patients documents (c) Less waiting time for medications |
| XI. Attitude of DOTS Provider Positive
Negative |
(a) Supportive and friendly attitude (b) Proper counseling related to treatment and diet (a) Negligence in providing treatment |
| XII. Expectations from National Programme | (a) Reduce number of pills
(b) Treatment at nearest DOTS Center (c) More awareness regarding disease and treatment (d) Nutritional support (e) Financial supp ort |
beech mai kabhi- kabhi drink bhi kar leta tha mai yeh karan hosakta hai ki mera treatment fail hogaya.”(I used to drink in between while I was on treatment, this may be the reason behind the failure of my TB treatment.)
Physical problems related to disease
Physical weakness, Loss of efciency in doing household work, Difculty in taking care of children were physical problems related to disease.
One patient said: “Frak toh pada hai ab thakaan bahut jaldi hojaati hai. Kamzori aagayi hai sharir mai. Kaam karne ka man nahi karta na hi hota hai mughse ab kaam. 3 mahine pehle kaam chod diya. Zara sa chalne par saas fulne lagta hai , sidiya nahi chad sakta.”(There is a difference now, I get tired easily. I feel weak. I don’t feel like working as I can’t work. I left my job 3 months earlier. I get dyspnea while walking, can’t climb stairs.)
Other patient responded: “Bacche ko sambhalne mai dikkat hoti hai. Bacchi choti hai 3 saal ki hai. Uski dekhbhaal karne mai dikkat hoti hai. Koi madad karne waala nahi hai, husband kaam par nahi jayege toh ghar ka kharcha kaise chalega. Mai toh koi kaam karti nahi, kamane waale woh akele hi hai.” (I face difficulty in baby-sitting. I have 3 yrs old daughter. I feel difficulty in taking care of her. There is no one to help. My husband goes for work; if he doesn’t go then it will be difficult to manage my expenses. I don’t do any work. He is the only bread winner of family.)
Emotional stress related to disease
Stress related to disease, Repeat medication, Alteration in daily routine and fear of not getting married were emotional stressors related to disease.
One patient said: “Mujhe bahut chinta hui ki mujhe TB kaise dobara ho gayi? Maine dawai bhi puri khaayi thi. Bahut pareshaan hu iss bimaari sai.”(I was very much tensed about how I got the TB infection again? I have taken complete treatment. I am very upset because of this disease.)
Other patient said: “Mujhe yeh tension hai ki ab dubara sai ilaaj karana padega aur dawai khaani padegi, ilaaj aur lamba chalega pehle sai, bache bhi kaam par jaate hai mai akela toh aa nahi sakta dawai lene, kamzori aa gayi hai bahut, khaya peeya bhi nahi jaata theek sai ab toh.”(I am tensed as I have to start the treatment all over again and have to take medicines. Treatment will be of longer duration. My children go for work and I can’t come alone to take medicines. I feel weak, I can’t eat and drink anything because of disease.)
Stigma related to disease
Isolation of patient, Avoidance of patients participation in social activity, Criticism from family members, Decreased traveling to relatives place were the forms of stigma prevailing in society.
One patient said: “Mai alag rehta hu. Mera room alag hi hai. Chahe garmi ho ya sardi ho mai kisi kai saath na laitta hu na baithta hu, alag khaata peeta hu mere bartan, kapde alag kar diye hai parivaar waalo nai.”(I stay in isolation. My room is separate. I don’t sit and lie down with anyone in summers and winters. I don’t eat with anyone. My utensils and clothes are separate from other family members.)
Another patient responded: “Baar baar mujhe sunaate hai ki agar tum pehle dawai khaa leti toh yeh naa hota. Hum kaha sai dikhaye, humme bhi musibaat jhelani padti hai, bas yehi bolte hai. Meri sass wagera itna matlab nahi rakhti hai mujhse.” (Everytime they criticise me that this might not have been happened, if I would have taken complete treatment. They say we don’t have time to get you treated, we also face problems. My mother in law doesn’t have any concern for me.)
Economic challenges
Limited income sources, Unemployment related to disease, Non affordability of balanced diet were economic challenges related to disease.
One patient said: “Ji paiso ki problem toh hai madam, mai ab kuch kaam nahi kar raha par bacho ko toh sab cheeze chahiye, ek ladki hai jo private chota mota kaam karti hai, part time karti hai , din mai college jaati hai, mai pehle supply ka kaam karta tha market mai, hard kaam hai ab mai nahi kar paata.”(We have financial problems. I can’t work but children need everything. One daughter works in a private sector, she works part-time. She goes to college in afternoon. I used to work as a supplier in market but it is very hard job, I can’t work now.)
One of patient’s reported: “Paiso ki bahut tangi hai, kisi cheez ko khaane ka mann kare toh mujhe sochna padta hai, apni khuraak par mai koi kharach nahi kar sakta.Kabhi -kabhi toh namak kai saath roti khaata hu.”(We have financial problems. If I want to eat anything then I have to think before buying it. I can’t spend money on my diet. At times I have to eat chappati with salt.)
Job related challenges
Extra leaves, Salary deduction, Fear of loss of job were job related challenges faced by patients
One of patient reported: “Mam kaam sai chutti leni padti hai jab test karane jaana hota hai toh, jyada chutti ho toh boss bhi bolte hai, daatt sunni padta hai. (Many times I have to take leave from work, if I have to go for test. My boss scold me if I take extra leaves.)
Other patient said: “Salary kat jaati hai jab chutti leta hu. Income mai kami aa jaati hai salary katne sai. Kaam bhi jyada furti sai nahi kar pata, kabhi kabhi man nahi karta kaam karne ka tabiyat theek na ho toh, pending kaam hojaaye toh badi mushkil hoti hai.” (My salary gets deducted if I take leaves. I get less salary because of deduction. I can’t work actively. Sometimes I don’t want to work if I am not feeling well. I face problems if my work is pending.)
Family support
Family provided motivation, assistance in household work, diet supplementation and nancial support to the patients.
One patient said: “Baccho sai support milta hai ki aap chinta mat karna kisi cheez ki yeah bimari hai thik ho jayegi. Sharir ke saath bimari to rehti hai. Ilaaj karne se thik hojayegi, koi lailaaj bimari toh nahi hai. Mere saath baat karte hain, Mera haal chaal puchte hai , mujhe alag nahi kiya mere pariwar nai.”(I get support from my children. They counsel me not to worry, you will be alright. Illness is there with the body. You will get fine with treatment. They talk to me, ask about my well being. My family did not isolate me.)
Other patient said: “Ji husband bahut support karte hai, jab dawai lene aati hu toh bacchi ko sambhal lete hai, ghar kai kaam mai hi sahayta karte hai, khaana bhi bana lete hai agar meri tabiyat theek nahi hai toh, mera husband saath dete hai.” (My husband supports me. When I go to take medicines, he takes care of my daughter. He helps me in my household work. If I am not feeling well then he cooks also. My husband is always with me.)
Health care system related factors
Some patients were not happy with registration with distant DOTS Centers and wanted proximity in treatment centers.
One patient said: “Jab bacche nahi hote toh yaha dawai lene aane mai hume dikkat hoti hai. Mai sector 25 sai aata hu yaha ilaaj karane, agar auto mai aau toh 50 rs aane ka 50 rs jaane ka kharcha hota hai, 100 rs din ka kharcha hojata hai DOTS Centre aane ka. Baccho ko bhi kaam par jaana hota hai. Jab mujhe lekar aate hai toh late hojate hai, yeh dikkat aati hai, humne kaha hai ki hamari dawai kahi pass sai shuru karwa doh.”(When my children are not home I face difficulty in going to take medicines. I come from sec -25 to get treatment, if I come by auto then I have to spend Rs 50 each side. 100 Rs. is my per day expense of travelling. My children are working they get late for their work if they accompany me. I face this difficulty, I have told them to start my treatment from nearest DOTS Centre.)
Attitude of DOTS Provider
Patients reported that DOTS providers had supportive and friendly attitude and provided proper counseling related to treatment and diet but some were negligent in providing treatment.
One patient said: “Sabne acche se samjhaya ki medicine kaise leni hai. Khane me kya khana hai. Bataya ki Somvar, Budhwaar aur Shukarwar ko khani hai. Hume Samne bitha kar khilate hai ghar mein lai jaane ke liye nahi dete. Bataya ki nasha nahi karna hai aur smoking nahi karni, illaj 8 mahine chalega. Dawai beech mai na chode.”(They explained quite well about how I have to take the medicine. What kind of diet I have to take. They explained that I have to take medicine on Monday, Wednesday and Friday. We took medicine in front of them. They don’t give medicine to take home. They explained that we should not smoke and drink while on treatment. I should not leave treatment in between.)
Other patient said: “Ji maine pehle dawai toh puri khayi thi but maine pura course 4 months mai hi nish kar diya, kunki unhone mujhe theek sai nahi bataya ki dawai kaise khaani hai. Maine Himachal sai li thi pehle dawai, mujhe box ghar kai liye dai diye bataya nahi tha ki kaise – kaise khaani hai. Mujhe dawai kaa heavy lagi mughe nahi pata ki kitni khaani hai kunki 12-12 ki strip bhi hoti hai. Dawai maine puri li but time period kam tha 4 mahine mai hi maine 6 mahine ki dawai kha li thi. Jab mai box wapis karne gayi tab woh bole ki aap batana mat kisi ko, aapko 6 mahine khaani thi aapne pehle hi nish kar li, aise toh aap mar bhi sakte thae.Na unhone koi test kiya, na ghar aaye na hi DOTS Centre bulaya. (I have taken complete treatment but I have finished my course in 4 months because no proper information was given to me regarding duration of treatment. Previously, I have taken treatment from HP they gave me medicine box without any counseling. I found the medicine to be very heavy and was not aware how to take them, there were 12-12 strips of medicines. I finished the course in 4 months period instead of 6 months. When I went to return the box they told me not to disclose it to anyone, They said I could have died as I took double doses. They did not run any test nor they came home or called me to DOTS Centre.)
Expectations from National Programme
Reduction in number of pills, Treatment at nearest DOTS Center, More awareness regarding disease and treatment, Nutritional support, Financial support were the expectations of patients from national programme.
One patient said: “Mai toh yehi kahungi ki sarkar TB kai marijo kai liye accha kar rahi hai, bas thoda dawai mai badlaav karna chahiye , dawaiya bahut bhaari hoti hai aur khane mai dikkat hoti hai, agar dawaiya kam hogi toh khane mai asaan hoga.”(I would say that govt. is doing really good for TB patients. There should be a change in medicines, medicines are very heavy and it is difficult for patients to take them. If they can decrease the quantity of medicines then it would be easy for patients to take them.)
Other patient said: “Ji joh dawai hame yaha mil rahi hai woh hum khaa rahe hai, par ilaaj kai liye dur aana padta hai .Ji apne sukh sai ya khushi toh koi aata nahi hai, har insaan apne dukh sai aata hai. Jab koi pareshani hoti hai jaise bhukhaar chadega toh log bhagege, ya kuch aur pareshani logi toh log aate hai toh har insaan sochta hai ki hamara ilaaj najdeek mai hojaye toh accha hai. Mai toh yehi chahta hu ki mera ilaaj najdeek sai hojaye.”(I am taking the medicines that they are giving me, but I have to travel quite a lot for treatment. No one comes to take medicine by their choice they come when they are unwell. If a person is having fever then only he will rush to doctors. Everyone wants to take treatment from nearby health facility. I wish they could start my treatment from the nearest health facility.)
One patient said: “Ji sarkar toh dawai free dai rahi hai, accha kar rahi hai, par dawai kai saath khuraak bhi toh chahiye jo hum jaise log nahi khaa paate, mai chahta hu ki sarkar dawai kai saath kuch khaane ko bhi dai un logo ko bahut gareeb hai, taaki dawai acche sai asar kare aur marij jaldi theek ho, ya hamari madat paiso sai kar dai taaki hum acchi khuraak lai sakae.”(Government is doing very good job by providing free medicines but with medicines nutritional support should also be provided to those who cannot afford good diet. I want that diet should also be provided to poor patients so that medicines can work effectively and patients may get speedy recovery. They can also provide financial support so that we can buy good diet for our self.)
Discussion:
Very few research endeavors are there to identify factors associated with loss to follow up, relapse and treatment failure as per patients’ perspective. The current study identied the various factors which are responsible for loss to follow up, relapse and treatment failure according to patients. The t reatment non- compliance is recognized as one of the major challenges in achieving TB control. Medicines related issues like side effects of medicines, pill burden were responsible for non-adherence to treatment. In India traditional medicine system is deeply rooted. Patients generally have notion that allopathic medicines are hot in nature and will make them sicker. Patients usually go to traditional healers and take ayurvedic medicines when they feel sick. One of patient reported I” could not take TB medicines as I was not able to swallow them. Medicines are very thick; they cause acidity and irritation in my stomach. I couldn’t tolerate the suffocation and ghabrahat because of medicines, so I left the treatment in between.”
Similar ndings were shown in a study by Federick 16 which revealed that major factors leading to non-compliance included patients beginning to feel better, lack of knowledge on the benets of completing a course, running out of drugs at home and TB drugs being too strong.
Study by Boru et al in Ethopia revealed that many patients were unable to adhere to their treatment because of lack of adequate food, poor communication between healthcare providers and patients, beliefs in traditional healing system, unavailability of the service in nearby health facilities, side-effect and pill b u r d e n o f t h e d r u g s , s t i g m a a n d discrimination.13
Physical problems related to disease contributed to non compliance to treatment. Patients had role limitations due to physical problems, bodily pain, and decreased vitality. Women had burden of house care, child care and employment which was obstacle in gaining access to diagnostic facility and completing their adequate treatment. Similar ndings were reported in a study by Guo 17 which showed that quality of life aspects affected by TB included physical functioning and emotional/mental well-being.
Tuberculosis affects the most productive age group and the resultant economic cost for the society is high. This disease has considerable impact on patient’s household’s in terms of income, health, education and nutrition, particularly if patient is a wage earner. Socio-economic factors were also important contributory factors to non-compliance to treatment. The nancial constraints that r e c o g n i z e d t h r o u g h l a c k o f m o n e y, unemployment due to disease, transportation cost, food has been continued to exert their inuence on TB patients. Majority of patients were unemployed due to disease and dependent on their family members for their living. They had to borrow money to meet their daily expenses. They couldn’t arrange balanced diet for them due to poverty, which is required for better treatment outcomes. One of the participant verbalized that “We have financial problems. If I want to eat anything then I have to think before buying it. I can’t spend money on my diet. At times I have to eat chappati with salt.” Other patient responded that M” y salary gets deducted if I take leaves. I get less salary because of deduction. I can’t work actively. Sometimes I don’t want to work if I am not feeling well. I face problems if my work is pending. “
A study conducted by Rajeshwari19 revealed that the total costs, and particularly indirect costs due to TB, were relatively high. The average period of loss of wages was 3 months. Care giving activities of female patients decreased signicantly.
Lack of knowledge and misconceptions about transmission of disease lead to discrimination like separate utensils for food or drink. Diagnosis of TB is associated with increase anxiety/tension, fear of loss of wage/earning, and stigma threatening self- esteem and quality of life. Present study showed that there was knowledge decit in patients and care givers related to disease and course of treatment. I” just know that TB is a disease in which we have to take precautionary measures. It can be fatal if it spreads. I don’t know about how this disease occurs and spreads.”They were not aware about the factors responsible for causation and transmission of TB infection. There was knowledge gap related to the course and duration of treatment. They also did not have information about the need and importance of adherence of medicines in patients.
Study by Chinnakali revealed that majority of patients had heard about TB and were aware that cough is a symptom of TB. Sputum examination as a method of diagnosis was known to only 40%. However, 84% of the subjects were aware of the free treatment available for TB under National program.19
Despite being curable, tuberculosis is still a stigmatized disease. Not only is TB patients’ suffering due to its clinical manifestations, but a l so because of society’ s prejudice, embarrassing situations, and even self- discrimination. The study revealed that stigma related to disease was very much prevalent in society. Patients were kept isolated from other family members. Patients usually avoided participation in social activity because of stigma related to TB. They had feeling of worthlessness and hopelessness due to disease condition. Patients also reported that they didn’t disclose their TB status at ofce as they feared of losing their job because of their TB status.
Study conducted by Liefooghe revealed that due to fear patients often denied the diagnosis and rejected the treatment. While both male and female TB patients faced many social and economical problems, female patients were more affected. Divorce and broken engagements seemed to occur more often in female patients. Females were usually economically dependent on their husbands and family in law, and needed their cooperation to avail of treatment.20 Study by Dias et al had found that TB still causes patients to suffer from fear of transmission, social prejudice, and death. Despite the fact that the emotional support provided by families and healthcare professionals is considered essential to t reatment adherence and completion, participants in this study reveal that friends and colleagues have distanced themselves from them for fear of contagion and/or prejudice.21
Health care workers’ attitude, clinic opening times, availability of medicines, accessibility issues were important factors contributing for treatment compliance. All the respondents in the study revealed that attitude of health workers was friendly except one who reported that attitude of health worker was unprofessional and unfriendly.
One of the respondents in the study reported that no counselling was given to her related to the treatment and no follow up was planned for her when she was on treatment. She completed 6 months treatment in 4 months as complete box was given to her without any counselling and DOTS was not initiated.
Study conducted by Bonsu et al dened s e r v i c e s a t i s f a c t i o n a s i n v o l v i n g education/counselling, patient follow-up, assignment of reliable treatment supporters as well as being attentive and receptive to patients, service availability, positive assurances about disease prognosis and respect for patients.22
Smoking, drinking alcohol were the important factors related to relapse and treatment failure. The implications of patients taking alcohol while on treatment are threefold. Firstly, patients may forget to take their medicines under inuence of alcohol, secondly there may be more side effects of TB medicines particularly when patients are taking alcohol with treatment. Thirdly there are chances of relapse of disease if patient continues to take alcohol after completion of treatment.Exposure to occupational hazards may also have contributed to relapse of disease. Patients reported that job prole and working conditions were responsible for relapse of disease. A study conducted by Mlotshwa et al revealed that male gender, HIV co-infection and a >2+ acid fast bacilli (AFB) smear grading at the start of TB treatment were independent risk factors for non-conversion. Age was a risk factor for non- conversion in new cases, but not for re- treatment cases
.23 A study by Morsy et al revealed that signicant risk factors for treatment failure were non-compliance to treatment, decient health education to the patient, poor patient knowledge regarding the disease and diabetes mellitus as co-morbid condition.
24 Lack of balanced diet and non adherence to medicines were also reported by patients to contribute to relapse of disease. Patients were not able to eat balanced diet due to socio- economic factors or side effects of medicines like anorexia.
Primary resistance to medicines was a major factor of treatment failure. If a patient is already resistant to anti-tubercular medicines then he will not respond to the current regimen available for TB. Many patients take treatment from private practitioner, traditional healers, quacks which make them resistant to medicines. There were several responses from patients when they were asked about their opinion on what could be done to help TB patients. Patients had many expectations from health programme. Majority of patients wanted reduction in pills so that they can take medicines easily and it would decrease side effects of medicines. In this study patient who had to travel a distance to get treatment wanted his treatment to be started at nearest DOTS Centre.
Patients wanted government should take more initiative to spread awareness about the disease. They reported that they were not aware about the disease, its mode of spread and treatment. The patient responses highlighted the need to address nancial and nutritional support for those who can’t afford diet and were unemployed due to disease condition. They appreciated that govt. is doing good by providing free medicines but also emphasized the need for balanced diet with medicines.
Conclusion:
This study has demonstrated many factors responsible for loss to follow up, treatment failure and relapse in TB patients. Although medicines are provided free of cost but side effects of medicines and pills burden can be a disabling factor in completion of treatment. Lack of adequate food, side-effects, pill burden of the drugs, stigma and discrimination were factors that contributed to poor TB treatment adherence in the study area. In addition to this low socio-economic status, family liabilities, awareness issues and burden of losing income from work contributes to non-compliance. Addictions, imbalanced diet, primary resistance, secondary infection and non compliance to treatment contribute treatment failure and relapse of disease. Patients were knowledge decit related to spread and treatment of tuberculosis. They need education on TB and importance of DOTS.
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