Introduction
Methods
Study design and setting
Study population and duration
Quantitative
Qualitative
Data collection tool
Cost survey tool (quantitative)
Interview guide (qualitative)
Data collection
Quantitative
Qualitative
Definitions (quantitative)
Costs, catastrophic costs, and combined costs
Standard of living index and annual household income
Treatment outcomes
Analysis
Quantitative
Qualitative
Results
Quantitative
Characteristics of patients
Characteristic | Number (%) or median (IQR) |
---|---|
Socio-demographic characteristics | |
Age in years | 37 (29–48) |
Male | 182 (78) |
Educational status | |
No formal education | 156 (68) |
Primary (7th pass) | 59 (25) |
Secondary (10th pass) and above | 19 (8) |
Married | 184 (79) |
Scheduled caste (SC)/scheduled tribe (ST) | 20 (9) |
Extended family (vs nuclear family) | 186 (80) |
Urban residence | 125 (53) |
Current tobacco smoking | 65 (28) |
Current regular alcohol consumption | 3 (1) |
Economic characteristics | |
Cash assistance received for TB (n = 139) | 97 (70) |
Amount of cash assistance received in INR (n = 139) | 3000 (0–3000) [~US$ 44 (0–44)] |
Monthly family income in INR | 9000 (7500–11,000) [~US$ 132 (110–162)] |
Below poverty line (BPL) card | 117 (50) |
Standard of living (SLI) index | |
Low (SLI score 1–7) | 44 (19) |
Middle/high (SLI score 8–23) | 190 (81) |
Employed in paid work before TB diagnosis | 144 (62) |
Currently in paid work | 122 (52) |
Sole earner in the family | 41 (18) |
Clinical characteristics - TB | |
Sputum acid-fast bacillus smear grade | |
Negative | 170 (73) |
Scanty | 22 (9) |
1+ | 27 (12) |
2+ | 10 (4) |
3+ | 5 (2) |
Extrapulmonary TB | 66 (28) |
Drug-resistant TB | 9 (4) |
Phases of treatment | |
Intensive phase of TB treatment | 25 (11) |
Continuation phase of TB treatment | 51 (22) |
Treatment completed | 158 (67) |
First TB visit with a private provider | 91 (39) |
Hospitalized due to TB at the first visit | 30 (13) |
Treatment outcomes | |
Successful treatment outcomes | |
Treatment completed | 43 (18) |
Cured | 143 (61) |
Unfavorable treatment outcomes | |
Death while on treatment | 33 (14) |
Lost to follow up | 8 (3) |
Treatment failure | 7 (3) |
Clinical characteristics - HIV | |
On ART | 224 (96) |
CD4 count in mm3 | 350 (218–420) |
First HIV visit with a private provider | 55 (24) |
Hospitalized due to HIV at the first visit | 16 (7) |
Costs incurred due to TB and TB-HIV
Categories of costs | TB costs | HIV costs | Combined TB-HIV costs |
---|---|---|---|
Direct medical | 0 (0–1043) [~US$ 0 (0–15)] | 0 (0–0) | 0 (0–1700) [~US$ 0 (0–25)] |
Hospital stay charges | 0 (0–100) [~US$ 0 (0–1.5)] | 0 (0–0) | 0 (0–113) [~US$ 0 (0–1.7)] |
Consultation | 0 (0–0) | 0 (0–0) | 0 (0–0) |
Radiography | 0 (0–0) | 0 (0–0) | 0 (0–0) |
Laboratory | 0 (0–300) [~US$ 0 (0–4)] | 0 (0–0) | 0 (0–300) [~US$ 0 (0–4)] |
Procedures | 0 (0–0) | 0 (0–0) | 0 (0–0) |
Drug | 0 (0–500) [~US$ 0 (0–7)] | 0 (0–0) | 0 (0–1000) [~US$ 0 (0–15)] |
Prescribed nutrition | 0 (0–0) | 0 (0–0) | 0 (0–0) |
Direct non-medical | 1970 (1355–3593) [~US$ 29 (20–53)] | 1080 (660–1500) [~US$ 16 (10–22)] | 3195 (2018–5168) [~US$ 47 (30–76)] |
Travel to attend health facility | 1970 (1355–3550) [~US$ 29 (20–52)] | 1055 (660–1500) [~US$ 16 (10–22)] | 3175 (2018–5163) [~US$ 47 (30–76)] |
Food purchased to attend health facility | 0 (0–0) | 0 (0–0) | 0 (0–0) |
Accommodation to attend health facility | 0 (0–0) | 0 (0–0) | 0 (0–0) |
Opportunity costs during clinic visits | 0 (0–0) | 0 (0–0) | 0 (0–0) |
Indirect | 1252 (683–2192) [~US$ 18 (10–32)] | 725 (338–1600) [~US$ 11 (5–24)] | 2218 (1234–3690) [~US$ 33 (18–54)] |
Loss of wages to attend health facility | 824 (331–1300) [~US$ 12 (5–19)] | 400 (138–1200) [~US$ 6 (2–18)] | 1386 (650–2351) [~US$ 20 (10–35)] |
Wage loss of accompanying member | 300 (150–500) [~US$ 4 (2–7)] | 200 (200–400) [~US$ 3 (3–6)] | 600 (300–900) [~US$ 9 (4–13)] |
Household income loss due to TB | 0 (0–0) | – | – |
Total costs | 4613 (2541–7429) [~US$ 69 (37–109)] | 2223 (1278–3825) [~US$ 33 (19–56)] | 7355 (4337–11,657) [~US$ 108 (64–171)] |
Catastrophic costs and coping strategies
Type of coping strategy | Number (%) or median (IQR) |
---|---|
Coping strategy of any one kind | 34 (15) |
Borrowed money as loan | 5 (2) |
Amount borrowed in Indian Rupees | 10,000 (1501–15,000) |
Lost employment after TB diagnosis | 21 (9) |
Started employment to cover costs of TB | 3 (1) |
Working days lost to TB | 45 (29–70) |
Outsourced household chores during TB care | 5 (2) |
Qualitative
Reasons for increased costs of TB-HIV
Categories | Program functionaries | Patients | ||
---|---|---|---|---|
TB | HIV | TB | HIV | |
Apathy of government hospitals | √ | √ | √ | √ |
Costs in private sector | √ | √ | √ | √ |
Patient behavior and response | √ | √ | √ | √ |
Troubles with cash assistance | √ | √ | √ | √ |
Employment interruption | √ | √ | √ | √ |
“For diagnosis, the patients have to do frequent visits, immediately reports are not available, plus they have to waste a lot of time. Apart from the problems faced by them for transport, if they get some comfort after coming here that proper diagnosis was done, a proper examination was done, proper treatment was given … because sometimes patients do complain that doctor was not available, or proper diagnosis was not done or timely report was not available or for one report they had to wait for 4-5 hours from morning till evening - these kind of complaints are there.” (TB health visitor, 5 years of experience).
“For ART, even patients in rural areas have to come to Bhavnagar [tertiary care hospital] for getting their monthly medicines.” (Senior treatment supervisor, 18 years of experience).
“I used to remain sick so we used to take medicines from a doctor nearby. I had diarrhea and vomiting, so the doctor couldn’t recognize [my disease]. Then I went to a surgeon at a hospital, who charged me 7000 rupees for 2 days. We spent 1200-1500 rupees on consultation. After doing the reports in another hospital, they referred me to a government hospital as the expenses would have been 10000-15000 rupees per month.” (59 years, male patient).
“There are 25% patients whose counseling is not done or, sometimes even there are 10% patients who feel that I took treatment for 10-15 days, and I am feeling better now. I am spending my money, losing my daily wages by putting leave, I am spending 1500-1700 rupees, so I do not need any further medicines.” (Senior treatment supervisor, 5 years of experience).
“Patients make special requests that they don’t want to declare. Not disclosing is the stigma toward TB. People do not go to the government, they go to private. They believe that TB is inherited, so it will be transmitted to their children. That is why they go to private.” (Senior treatment supervisor, 20 years of experience).
“We went to the government hospital first and there was some recovery. In the middle of the treatment, I stopped the medicine as there were so many ulcers in my mouth. I got so sick that we went to the private hospital then.” (42 years, female patient).
“I was told that 500 rupees per month will be given but, it was given only for one month and not after that. My livelihood can continue if we get proper assistance. I am the sole earning person in my family, my son is young and he studies and does menial jobs after school. My wife too does cooking-related work.” (49 years, female patient).
“… if he is very poor or is a migrant worker, he does not have an Aadhaar card [social security number], then it happens... Or, if a patient who even didn’t open a bank account, then they do not get the cash assistance.” (Senior treatment supervisor, 3 years of experience).
“I lost my job due to HIV around 5 years ago. At our job they don’t grant us leave that causes a problem. Now I am searching for another job.” (25 years, male patient).
“Due to less immunity, due to weakness they are not able to work, since they are not able to work, the entire family’s income stops.” (Senior treatment supervisor, 8 years of experience).
“At the time of treatment, I took rest for 3 months continuous and could not go to work. I worked in a private company as a diamond worker so they did not pay my salary.” (49 years, male patient).
Solutions for increased costs of TB-HIV
Categories | Program functionaries | Patients | ||
---|---|---|---|---|
TB | HIV | TB | HIV | |
Improved care | √ | |||
Improvements in private sector | √ | |||
Create awareness | √ | √ | ||
Cash and other benefits | √ | √ | √ | √ |
Health worker support | √ | |||
Improve government health systems | √ | √ | √ | √ |
Home-delivered care | √ | |||
Timely referral | √ | √ |
“For HIV, I suppose that if their ART is kept in the nearby health centers, then it can reduce their costs of traveling every month to the main hospital.” (TB health visitor, 10 years of experience).
“We have to convince them that we will not come to their house, but take government medicine, no one should know around us. With that commitment, they take our medicine. We don’t tell anyone, we don’t visit their house, this way we have completed many patient’s treatments.” (Senior treatment supervisor, 8 years of experience).
“Government should make sure that any doctor, including private, has to give AKT or MDR medicine from the government only. The patient should not be able to change the medicine on his own. There is a DST-guided [drug-susceptibility testing] treatment in government.” (Senior treatment supervisor, 20 years of experience).
“If the government wants, they can give projects to NGOs [non-governmental organizations]. There were NGO hospitals, here also we had one but it is closed now. They used to test our sputum for free, HIV testing for free.” (Senior treatment supervisor, 7 years of experience).
“We form a TB champion group comprising of village leaders, health workers, and volunteers. We give all the information related to TB to this group. If any patient in the village is refusing TB treatment, then the champion group takes the help of a patient who has completed treatment and counsels non-compliant patients to complete their treatment. A cured patient can say that look at me I am cured now … they may believe him.” (Senior treatment supervisor, 5 years of experience).
“At present, the private and the government are in a mix, so we can give enough guidance. We can explain to a private patient on a phone call. We can guide HIV, and diabetes patients also. After taking the Aadhaar card [social security number] and bank details, we explain to them about 500 rupees assistance per month even in private.” (TB health visitor, 7 years of experience).
“I believe they incur costs for food. We ask them to eat healthy food. People who spend their day just eating milk and bread … even for basic food, 500 rupees is not enough. Either we should provide them with a food kit or more money should be given in some way.” (District program coordinator, 1.5 years of experience).
“There should be an integration of NTEP with PM-JAY. If patients who are taking treatment from the private sector are included under PM-JAY, then they will incur fewer costs, they can also keep their disease status confidential.” (Senior treatment supervisor, 20 years of experience).
“In rural areas, the PHI staff should be given the responsibility to provide care at home. For that, our supervisory team should be given the power to monitor. So that I can take some action if they don’t do the work.” (Senior treatment supervisor, 20 years of experience).
“If HIV is suspected, then ASHA worker [village-level health worker] can inform a village leader, and then they can inform us accordingly. If there are symptoms of TB or HIV, then it is common to get sick again and again, so they can inform us. If any person is not cured by the treatment as stated, and if they inform us, then we will send their samples for further investigations.” (Senior treatment supervisor, 4 years of experience).
“Currently, there is only one technician in a primary health center. If there are two technicians, one specially dedicated for TB, then an early diagnosis can be done.” (Senior treatment supervisor, 20 years of experience).
“In government, they are not having digital X-rays, they have very old machines. They are providing poor X-rays, so our MO [Medical Officer] is not able to identify early whether these are Koch’s lesions or something else. If the government gives digital X-ray facilities, then patients will be benefitted a lot.” (Senior treatment supervisor, 7 years of experience).
“If they can provide the medicine [for HIV] for 2-3 months, then we need not visit the hospital monthly … our expenses would be less and the patient load would also decrease. If there is any problem, we would go for a check-up.” (59 years, male patient).
“During Village Health & Nutrition Days [monthly services provided by health workers in villages and urban settlements] or any other such events, let the patient/anyone who has a problem be informed about the date of such events. There they can be diagnosed with HIV and other diseases, and reports can be sent to them. If such a notice is put on the notice board by the village leaders, then the public will be benefitted.” (Senior treatment supervisor, 4 years of experience).
“If private doctors do not order too many reports and diagnose early, then we can save money. My doctor ordered too many reports and took around 2500 rupees, only then was he able to diagnose my disease. Early reports would be helpful.” (26 years, male patient).
“When I got sick, 3-4 years back then I got admitted in a private hospital and they charged around 5000-6000 rupees. Again, I got sick and went to another doctor, he charged 1500 rupees. I did not know about this problem [HIV]. But, he referred me to a government hospital for medicines.” (59 years, male patient).