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RF_DIS_5_B_SUDHA
a study on Patients perspective in Tubercnlosts Treatment
INTRODUCTION
Magnitude of the problems caused by tuberculosis in India and worid wide is weii
documented. A number of researches been conducted in search of a solution and number
of projects been piloted in effective implementation of Tuberculosis control programme.
TB control has been a challenge unmet despite the fact that NTP was in place over three
decades and was revised due to global pressure and efforts are continued in
disseminating the facts that TB is curable, dr ugs and vaccines are available for treatment
and prevention.. According finding of some studies that though the patients knew that
TB is curable, requires prolonged regular treatment and irregularity' would lead to
deterioration and possible death were irregular and discontinued the treatment..
life
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Tuberculosis is among the most effective and cost effective of all diseases to treat yet it
had to be declared as Global emergence. It in India it is estimated that there are about
1440 people die of tuberculosis every day. It is also well known that this disease affects
tire poor more and it is evident that tire poverty status in India is further deteriorated by
globalization policies. Is weii kwon that the poor seek help from more that one place due
io various reasons and tins adversely affect treatment outcome and the patients pocket.
Information on health seeking behavior of the patients has already been studied in other
paits of India especially in Maharashtra and it is hoped that tliis study would bring in
some mor e insight in understanding the TB treatmentfrom tire patient’s perspective.
OBJECTIVES:
a. Assess the socio economic status of the patients.
a. Gain an understanding on the knowledge of the patients onTB
b. Understand the treatment seeking behavior of tire patients
c, Understand the impact of the disease on their lives and what adjustment they have to
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Patients who are under treatment and have discontinued treatment, would be selected
using tire cross sectional method fr om among tire urban poor. Tire interview technique
would be in-depth irterview by using aenri-structured guidelines for eliciting informati on.
INTERVIEW GUIDELINE
Socio economic status
Name. sex. age. occupation. income and educational Status of the patient
Assessment of economic status
househol d tilings.
through observation of the type of house and ihe
hifonnatiou oh TB
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know.
a
What do you know about this disease
’
Why do you tiii nk that you got tlii s di sea se
a
Are there any other reasons for people getting this disease
a
What do you think are the consequences if the disease is untreated and how long one
need to take the treatment.
a
Who are affected more bv tire disease male/ female ricli/ ooor/ poor vourie and old
why does it affect.
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r'ammimiroNo «ar»H lirvcir
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others?
s
How does uiis disease affect marriage
Commuiiity attitude
•
What do your family members feel about you ha vi ng the di sease?
a
Do any community members know that you have the disease if yes who and how did
they come to know
5
What do tlie comiiBniity members generally uiink about this disease
a
V/h3t do npnnlA acai is the reason for this disssso
s
Wliat are die ways people say that one can be cured of this disease
ITpin cppizinohpiinvinr and p-YnpripTirps
»
What were your complaints in the beginning and di d you do
anything at home and neighborhood.
Wht>n did von Rftpk hrrln /after hnw Irmol if snnpht I site rennnns
0
Where did you seek help form (different places) and who referred you there arid what
were your experiences.
3
Who choice was it to visit a particular place, reasons ?
*
Name the places you went to before coming to this center in search of help
-
Which are places that you visited for treatment or another help in relation to this
disease and what where your experience both positive and negative ( staff attitude,
information given, time spent and the physical setting of the place)
5
If more than one place reasons.
*
How much money you would have spent so far for the following
a.
coiisuitation
b.
investigation
e
v«
tvrckcr't'i oti rvn
v;evi i pus vu
d.
speed money
a
mum »•».• «w w-t-
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Since how i ong your are taking treatment from the present pi ace.
s
How7 diuyOii Come to uS£ ptuCe?
a
What information is “’ven to von bv the staff of tills confer about Tb and treatment
*
What life changes have taken place after you came to this center
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Cost of treatment utCittding indirect cost like transport
• Hbw tfiUvh itiiw ysy pspti
lu»s wages
fw tsteiiw ffts ffisHif'iffiis ffHiH fes tadih ESHfei
a
How far i s the heal th center from your place
■
do you go to work on that day if gone to work how much money you would have
earned
°
Does anyone accompany for treatment? if yes, who, and does this affect las/. Her
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a
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rinv
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you and why
Eafl'ience of atmosphere of the place
a
what you like most and least in the present place
A study on Patients perspective in Tuberculosis control
INTRODUCTION
Magnitude of the problems caused by tuberculosis in India arid world wide is well documented A number
■if researches been conducted in search of a solution and number of projects been piloted in effective
•mciementation of Tuberculosis control prog’amme. TB control has been a challenge unmet despite the fact
■hat NTP was in place over three decades was revised to due to global pressure and efforts are continued in
disseminating tire
that TB is curable. Causative organism was found 100 years ago, drugs and
vaccines are available for treatment and prevention.. According finding of some studies that it remained a
problem though the patients knew that TB is curable, requires prolonged regular treatment and irregularity
would lead to deterioration and possible death.
The resurgence of this disease made WHO declare TB a Global emergency in 1993. Tuberculosis is among
the most effective and cost effective of all diseases to treat yet it had' to be declared as Global emergence.
3. in India it is estimated that there are about 1440 people die of tuberculosis every day. It is also well
know that this disease affects the poor more and the poverty status in India is further deteriorated due
giobalization policies. Information on health seeking behavior of the patients is already studied and it is
hoped that this study would bring in some more insight in understanding the TE treatment from the
patient’s perspective.
OBJECTIVES:
i Asses tire socio economic .status of the patients.
a, Gain an understanding on the knowledge of the patients on TB
b. Understand the treatment seeking behavior of the patients ,—- <^-c'
•o H(v-AS
c OJUa^
,
METHODOLOGY
Patients who are under treatment andjhsve discontinued treatment,would be selected using the cross
sectional method from among the urban poor. The interview technique would be in-depth mtawiew by
using a semi structured guidelines .frneliritjngdaforiTBtton
INTERVIEW GUIDELINE
Socio economic status
Narrtefsex, agb, occupation, income and educational status of the patient
|| Assessment of economic status through observation of the type of house the household things.
Information on TB
What is the name of the disease that you are suffering from and how did you know that name name,
'■'That do you think are the consequences if the disease is untreated
What do your family members feel about you having the disease.
What do the community members think
’//hat do you think aEg-thew=?sonwfi.T thetoisease.
Who are affected by more by the disease male/ female rich/ poor/ poor young and old.
''
"
Treatment, seeking behavior
’//hat were your complaints in the beginning and when did you seek help ( after how long) if sought late
reasons
Where did you seek help form ( different places) and who referred you there and what were your
experiences.
If changed places reasons.
Since how long your are taking treatment form the present place and what are your experiences compared
to the other palaces positive and negative.
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INTRODUCTION
Magnitude of the problems caused by tuberculosis in India and world wide is well
documented, A number of researches been conducted in search of a solution and number
of projects been piloted in effective implementation of Tuberculosis control programme.
TB control has been a challenge unmet despite the fact that NTP was in place over three
decades and was revised due to global pressure and efforts are continued in
disseminating the facts that TB is curable, drugs and vaccines are available for treatment
and prevention.. According finding of some studies that though the patients knew that
TB is curable, requires prolonged regular treatment and iiregularity would lead to
deterioration and possible death were irregular and discontinued the treatment.
The resurgence of this disease made WHO declare TB a Global emergency in 1993,
Tuberculosis is among the most effective andcost effective of all diseases to treat yet it
had to be declared as Global emergence. ft-In India it is estimated that thwe-are about
1440 people die of tuberculosis every day. It is also well known that this disease affects
the poor more and it is evident that the poverty status in India is further deteriorated by
globalization policies. Is well kwon that the poor seek help from more that one place due to various reasons. Information on health seeking behavior of the patients has already
been studied and it is hoped that this study would bring in some, more insight in
understanding the TB treatment from the patient’s perspective.—•— K°J'
OtWECllVKSi:
a.
a.
b.
Assesjthe socio economic status of the patients.
Gain an understanding on the knowledge ofthe patients on TB
Understand the treatment seeking behavior of the patients
Lb<~As.xa.fr<=>
C-M?x
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METHODOLOGY
*
0
?
Patients who are under treatment and have discontinued treatment would be selected
using tlie cross sectional method from among the urban poor. The interview technique
would be in-depth interview by using a semi structured guidelines for eliciting
information.
ff^TERVIEWGCTDELINE
Sodo economic status
Name, sex, age, occupation, income and educational status of the patient
Assessment of economic status through observation of the type of house and the
household things.
„
\ (fcLs.
dil CC
4 th.
Q
9
Information on TB
■ Whai is file name of the disease that you are suffering from and how did you get to
know.
* What do you know about this disease
» Why do you think that you got this disease
• Are there any other reasons for people getting this disease
■ Whai do you think are the consequences if the disease is untreated and how long one
need to take the treatment.
s Who are affected
more by the disease male/ female rich/ poor/ poor young and old.
a Do you think this disease is communicable and how one can spread the disease to
others.
■ Can one
marry if he or she has this disease-if no;why
Giitmiiiniiy attitude
■
■ What do your family members feel about you having the disease.
■ Do any community members know that you have the disease .if yes who and how did
they come to know
/
a What do the community members think about this disease
• What do people say of the reason for this disease
Help seeking behavior anti experiences .
• What were your complaints in the beginning and did you do
- anything at home neighborhood.
■ when did you seek help ( after how long) if sought late reasons
■ Where did you seek help form ( different places) and who referred you there and what
were your experiences.
■ Who^hoice was it to visit a particular place.
■ Name the places you went to before coming to this center in search of help
■ If more than one place reasons.
■ Since how long your are taking treatment ftom the present place
■ How much time you need to collect the medicines from the health center and do you
go to wonfc-on that day if gone to work how much money you would have earned
■ What you like most and least in the present place
■ experiences of places visited both positive and negative ( staff attitude, information
given, time spent and the physical setting of the place
■ How much money you would have spent so far for the following
a consultation
b. investigation
c. prescription
INTERVIEW GUIDELINE FOR THE TB PATIENTS
Socio economic status
Name, sex, age, occupation, income and educational status of the patient
Assessment of economic status
household things.
through observation of the type of house and the
Information on TB
■
What is the name of the disease that you are suffering from and how did you get to
know.
■
What do you know about this disease,
■
Why do you think that you got this disease
■
Are there any other reasons for people getting this disease
*
What do you think are the consequences if the disease is untreated and how long one
need to take the treatment.
•
Who are affected more by the disease male/ female rich/ poor/ poor young and old
why does it affect.
*
Do you think this disease is communicable and how one can spread the disease to
others?
■
How does this disease affect marriage .
: <
x i.
-
.
-c........
Community attitude ?
,,
-< A
4*
A**'
<
■
What do your family members feel about you having the disease?
■
Do any community members know that you have the disease if yes who and how did
they come to know
*
What do the community members generally think about this disease
■
What do people say is the reason for this disease _/ < ■
■
What are the ways people say that one can be cured of this disease -
Help seeking behavior and experiences
■
What were your complaints in the beginning and did you do
anything at home and neighborhood.
■
W'hen did you seek help (after how long) if sought late reasons
<
''
■
Where did you seek help form (different places) and who referred you there and what
were your experiences.
*
Who choice was it to visit a particular place, reasons ?
■
Name the places you went to before coming to this center in search of help
•
Which are places that you visited for treatment or another help in relation to this
disease and what where your experience both positive and negative ( staff attitude,
information given, time spent and the physical setting of the place)
■
If more than one place reasons.
■
How much money you would have spent so far for the following
a.
consultation
b.
investigation
c.
prescription
d.
speed money
/
ev
■
*
Influence of health education on knowledge about the disease and treatment
■
Since how long your are taking treatment from the present place.
*
How did you come to this place?
■
What information is given to you by the staff ofthis center about Tb and treatment
■
What life changes have taken place after you came to this center
Cost of treatment including indirect cost like transport and loss wages
■
How much time you need to spend for taking the medicines from the health center
■
How far is the health center from your place
■
do you go to work on that day if gone to work how much money you would have
earned
■
Does anyone accompany for treatment? if yes, who, and does this affect his/. Her
work, in what way
■
Do have any experience of giving money to any of the staff or staff demanding form
you and why
Influence of atmosphere of the place
*
What you like most and least in the present place
■
Who do you like more in this place why and who you don’t like and why
INTERVIEW GUIDELINE FOR THE PRIVATE SECTOR
INVOLVED IN TB CARE
Name of Institution
Location (Address)
Phone #
_
Director/ In-charge
Person Surveyed
Funding Sources
Ye ar of Establishment
No of Staff Members:
Doctors
Nurses
r~~
Lab Technicians
Others
|
-------
No of Beds
No of Patients
No of TB Patients-------
Diagnostic Facilities Available
Case Finding/ Diagnosis
1. When do you ask for the investigations
2. Approximately how many patients come in with TB Symptoms in a
month? (suspect of TB)
Of these symptoms, we include:
Severe cough for extended period of time
Severe Weight Loss
Extended Fever
Blood in Sputum
Extreme Fatigue
Patches on Chest
Other
3. What percentage of patients are from lower/poor economic
backgrounds?
4. What diagnostic tools are used?
Chest X Ray
_
Sputum Culture
Both
_________________________________
Others
5. When do you repeat investigations?
6. What would you do if a patient presents his/herself with TB
symptoms yet the investigations return with negative results?
7. When do you ask for a sputum culture ?
8. How many of the patients do you find are co-infected with HIV?
9.What other co-infections are common?
10. What information is given to patients upon diagnosis?
11. What audio-visual aids do you have on TB? How often do/ are they
used and when do you normally use them?
12. Normally, what is the patient’s understanding of the disease?
Treatment
13. What are the most commonly prescribed drugs?
14. hi your experience, which ones work best?
15. What is the duration of the treatment regiment that you advise? How do
you decide this?
16. What percentage of patients responsive to treatment and follow it as
prescribed?
17. Of those who are not responsive to treatment, what do you think are the
reasons?
18. What exactly is the prescribed regimen (i.e. SCC)
19. What are common side effects of the treatment, and how do patients
handle them?
20. What percentage of the patients reports side effects?
21. What do you do to treat the side effects?
22. What are some major challenges in providing treatment?
23. What form of record keeping do you practice ? What do you do with the
records of patients who have terminated treatment?
24. Do you have a sample to show ?
25.How much do you charge for the following :
a) Consultation
Rs.t
b) Investigation (Sputum/X-Ray) Rs. I
c) Prescription
Rs.r
26. Where do you get the dings from?
27 .How much does an average course of treatment cost the patient?
28.Does your institution give any concession to the TB patients for the
following and how much?
a. consultation % I.
I
b. investigation % |
|
c. Prescription % <---- 1
29. Are you aware of how patients can get assistance in getting medication?
Case Holding/ Follow Up
30. What percentage of patients that you have treated completed treatment?
31. What are the most common reasons they stop?
Financial
Social
Side Effects
Other
32.What do you do when a patient discontinues his/her treatment?
33. What percentage of your patients become resistant ?
34. What percentage of patients come with MDR TB?
35.How do you treat these types of patients?
36.1s there special protocol/policy that you use for treating recurring
37. Wien do yon decide to refer patients elsewhere?
38.Are there any formal arrangements for referral?.
39.Tell me about the level contact and collaboration with any government
institutions dealing with TB treatment? Which areas do you focus on?
(who approaches who? Reporting, referral, etc )
40.Please tell me about tell me about the government programs for TB
control?
41 .How often do you encounter it in practice and how often do you use its
services?
42. Any other concems/questions/comments that you would like to raise?
Thank you for your cooperation
-7
'33-
A study on Patients’perspectivesfl'i Tuberculosis Treatment and^the role ofjPrivate
Sector in prevention and Control of TB -1-
INTRODUCTION
Magnitude of the problems caused by tuberculosis in India and worldwide is well
documented. Resurgence of TB made WHO declare it a global emergency in 1993.
Tuberculosis is among the most effective and cost effective of all diseases to treat yet it
had to be declared as Global emergence. (WHO)
TB control has been a challenge unmet in India despite the fact that NTP was in place
over three decades and was revised due to global pressure, in India it is estimated that
about 1440 people die of tuberculosis every day. It is also well known that this disease
affects the poor more and it is also evident that the poverty status in India is further
affected adversely by globalization policies. Links with Poverty has been explicitly
acknowledged in the 1940 health policy and later it was hidden under the category
sociological problems. A number of researches have been conducted in search of a
solution and a number of projects been piloted for understanding effective
implementation strategies in prevention and control of the disease.
It is observed that the prevalence is evenly distributed among both the rural and urban
population. It is well kwon that the poor seek help from more that one place due to
various reasons and this adversely affected treatment outcome and the patient’s pocket.
Most people with chest symptoms first approach the private practitioner for help and it is
evident that they are not equipped to handle the problem effectively for various reasons.
Information on health seeking behavior of the patients has already been studied in other
parts of India especially in Maharashtra and it is hoped that this study would bring in
more insight in understanding TB treatment from patient’s perspective and the role of
private sector.
Problem statement
It is well known that TB is associated with poverty, illiteracy malnutrition and over
crowding. Treatment of TB puts on an enormous physical, economical, psychological,
and social pressure on the patient particularly the poor patient and his or her family.
What bothers most people suffering from TB is their cough, chest pain, fever loss of
weight and body ache. It is least of their concerns that they are excreting the bacilli in
sputum and are infecting others. There were instances when TB patients said that they
just wanted to die due to depression and in other instances the patients had to sell their
valuables to pay of for the treatment. It is estimated that on an average a. TB patient
spends about 5500 rupees for treatment apart from transport and other indirect costs. As
TB affect more the young and the adults in the productive age group, the economic loss
to the nation is calculated as 1000 corore man-hours.
Most of the TB patient seeks first help from a private practitioner chiefly because they
are easily accessible and available. Normally they approach within two weeks after
developing chest symptom and most of them are sent away with cough mixtures.
Affordability' is a question that arises later during treatment, which is one of the main
reasons that force the poor TB patients to become irregular in treatment for some time.
Some of the other reasons for discontinuing treatment are; priorities in the family, feeling
well, cannot leave work and come for treatment, unavailability of drugs in the center
when approached, side effects, staff attitude and distance. Poor nutrition, strong
medication and alcohol cause side effects such as nausea and dizziness that prevents a
patient from continuing treatment. Finding of a study revealed that patients who stayed
beyond 5 kms from the health centers were irregular with treatment. The support
available both family and community level to a person suffering from TB for enabling
him/her complete treatment is insignificant. Besides these the problem of stigma still
persists and has its negative impact. TB patients face rejection by neighbors, employers
and coworkers. Young brides who developed symptoms are returned to their homes as
unfit to bear children, their dowries forfeited.
As a reslut of these problems many of them become MDR ( Multi Drug Resistance)
MDR means more a death trap to person who has defaulted treatment. Cost of treating
MDR is 100 times more. If dropped from treatment due to this factor, the consequences
are that the loss to the family in incalculable and the patient would have transmitted the
disease to many other people at least 10 to 15 before their death. It is 30 years since a
new drug has been brought into market and the chances in the near future are very
remote. Understanding personal experiences of the patients taking treatment, and factors
that affect both at family and community level would help in planning an appropriate
strategy for effective prevention and control of the disease.
India bears two third of the burden of the problem ofTB in the world of which 60 per
cent of the TB patients are managed by the private practitioners. In India there are about a
million registered doctors who are involved in private practice. There are many others
who trained and untrained from non-allopathic system of medicine are also involved in
private practice. Attractive monitory benefit has been the driving force behind setting up
practice for many of them.
Not much information is available on patient attending the private clinics, the diagnosis
procedure, treatment regimen used, adherence to treatment in Karnataka, However the
information available of the situation elsewhere show's that most of the private
practitioners prefer x-ray to sputum smear for diagnosis which is unnecessary for
diagnosing most cases. About treatment though many of them used dings specified under
the short course chemotherapy, they were inappropriate with the combination and
duration. A study conducted in Mumbai revealed that the private practitioners have used
80 to 90 combination of the dings prescribed under SCC. Experience’s of a few' of the
private practitioners who had knowledge of diagnostic procedures, treatment regimens
and had a better relationship with the patient which resulted in educating and motivating
them have shown better results.
The problems with the private practitioners have been that their knowledge and
experience for managing TB is inadequate. Most of the private practitioners from both
the system of medicines are dependant on medical representatives for upgrading their
knowledge. Many of the private practitioners from non-allopathic system of medicine
have learnt allopathy and were practicing independently or under a senior allopathic
practitioner. Many of them are not aware existence of public health services for
tuberculosis and those who are aware have negative attitude towards the functioning of
public health services that prevents them from referring the TB patient there. However
some of them do have the compassion to send the patient to the public health service
when they discover the inability of the patients to pay for their service. It is understood
that stigma attached to the disease prevents some of them from disclosing the diagnosis to
their patients.
Health seeking behavior has been studied in many part of the country and it is evident
that most of the TB patients first seek help from the private practitioner^^Ss
recommended that the involvement of private sector in RNTCP would be crucial for
effective and prevention and control of the disease. Therefore it is important to leant form
their experiences, strengths, weaknesses and their perspectives.
Aim:
Conduct a sociological enquiiy on the impact of tuberculosis treatment and the to
understand the role of private practitioners in prevention and control of the disease.
OBJECTIVES:
a Assess the socio economic status of the patients.
a. Gain an understanding of patients perception onTB
b. Understand the treatment seeking behavior of the patients
c. Understand the impact of the disease and the treatment on their lives and the
adjustment they need to make towards this.
METHODOLOGY
Patients under the RNTCP programme implemented through the Health Centers of
BMP(Bangalore Mahanagara Palike) would be identified. Information would be collected
using
in-depth interview and focus group discussion techniques. They would be
selected using the cross sectional method from among the urban poor. Likewise the
private practioners located in and around the slums of Bangalore would be identified for
in depth interviews and if possible a few focus group discussions would be held with
them.
Reference:
1.
A.J.Desai. Director RC,Bombay harbor project
2.
A.K.Chakraborty, Sheela Rangan, Mukund Uplekar, Urban TB control problems/
prospectives 1995 FRCH.
3.
Binayk Sen, MFC bull,105 Sep 1984
4.
Kalicliaran Mathur, Tuberculosis treatment Management under private medical
practioners, Y2k Indian journal ofTnberculosis volume 47.49
5.
Mukund Uplekar and Sheela Rangan “Tackling TB” the search of solutions
FRCH 1996
6.
M.W. Uplekar, A.S.Vadair, S.G.Rangan, S.D.Parande, S.KJuvekar, D.b.Dalal and
S.S.Khanvilkar, Tuberculosis management in private practice and its implications,
Tuberculosis Journal oflndia 1996 volume 43.19
7.
Marie D’souza, Background paper,MFC annual meet 1985
8.
Prabir Chatterjee, review ofRNTCP, MFC bull 250.51
9.
S.G.Rangan and M.uplekar Y2k Social Cultural Dimension in TB control an
Interdisciplinary perspective, Imperial college press
10.
Sophia Vijay, Balasubramaniam and Srikantaramu Treatment dynamics and
profile of Tuberculosis patient under DTP A prospective cohort study “Indian
journal ofTnberculosis. 1999 volume 46,239
11.
Sanjay Juvekar, M.W. Uplekar, S.N.Manohar, D.Dalal, M.kamble, A.Deshpande,
M.KasareN.Tilekar and B.Bhatti, Behavior profile of tuberculosis in private
clinics Tuberculosis Journal oflndia 1998 volume 45.95
12.
Sanjay Juvekar, M.W. Uplekar, S.N.Manohar, D.B.Dalal, S.G.Rangan,
S.S.khanvilkar S.A.Vadair and A.Deshpande, Social and operational
Determinants of patient behavior in lung tuberculosis, Tuberculosis Journal of
India 1995 Volume 42.87
13.
T.Narayan, a study of policy process and implementation ofthe NTCP in India
14.
U.N.jajoo, background paper, MFC annual meet 1985
I If
e> 6/ 2-enrf
A study on Patients perspectives regarding TB treatment under RNTCP
Introduction
Magnitude of the problems caused by tuberculosis in India and worldwide is well
documented. Resurgence of TB made WHO declare it a global emergency in 1993.
Tuberculosis is among the most effective and cost effective of all diseases to treat yet it
had to be declared as Global emergence. (WHO)
TB control has been a challenge unmet in India despite the fact that NTP was in place
over three decades and. was revised due to global pressure. In India it is estimated that
about 1440 people die of tuberculosis every day. It is also well known that this disease
affects the poor more and it is also evident that the poverty status in India is further
affected adversely by globalization policies. Links with Poverty has been explicitly
acknowledged in the 1940 health policy and later it was hidden under the category
sociological problems. A number of researches have been conducted in search of a
solution and a number of projects been piloted for understanding effective
implementation strategies in prevention and control of the disease.
It is observed that the prevalence ig evenly distributed among both the rural and urban
population. It is well kwon that the poor seek help from more that one place due to
various reasons and this adversely affected treatment outcome and the patient’s pocket.
Information on health seeking behavior and the patients perspective regarding the
treatment has already been studied in other parts of India especially in Maharashtra and
it is hoped that this study would bring in more insight in understanding TB treatment
from patient’s perspective.
Problem statement
It is well known that TB is associated with poverty, illiteracy malnutrition and over
crowding. Treatment of TB puts on an enormous physical, economical, psychological,
and social pressure on the patient particularly the poor patient and his or her family.
What bothers most people suffering from TB is their cough, chest pain, and fever loss of
weight and body ache. It is least of their concerns that they ar e excreting the bacilli in
sputum and are infecting others. There-were instances when TB patients said that they
just wanted to die due to depression and in other instances the patients had to sell their
valuables to pay offer the treatment. It is estimated that on an average a TO patient
spends about 5500 rupees for treatment apart from transport and other indirect costs. As
TB affect more the young and the adults in the productive age group, the economic loss
to the nation is calculated as 1000 crore man-hours.
Most of the TB patient seeks first help from a private practitioner chiefly because they
are easily accessible and available. Normally they approach within two weeks after
developing chest symptom and most of them are sent away with cough mixtures.
Affordability is a question that arises later during treatment, which is one of the main
reasons that force the poor TO patients to become irregular in treatment for some time.
i
Some of the other reasons for discontinuing treatment are; priorities in the family, feeling
well, cannot leave work and come for treatment, unavailability of drugs in the center
when approached, side effects, staff attitude and distance. Poor nutrition, strong
medication and alcohol caused side effects such as nausea and dizziness also prevents a
few patients from continuing treatment. Finding of a study revealed that patients who
stayed beyond 5 kms from the health centers were irregular with treatment. The support
available both family and community level'lo a person suffering from TB for enabling
him/her complete treatment is insignificant. Besides these the problem of stigma still
persists and has its negative impact. TB patients face rejection by neighbors, employers
and coworkers. Young brides who developed symptoms are returned to their homes as
unfit to bear-children, their dowries forfeited.
As a result of these problems many of them become MDR (Multi Drug Resistance) MDR
means more a death trap to person who has defaulted treatment. Cost of treating MDR is
100 times more. If dropped from treatment due to this factor, the consequences are that
the loss to the family in incalculable and the patient would have transmitted the disease to
many other people at least 10 to 15 before their death. It is 30 years since a new drug has
been brought into market and the chances in the near future are very remote.
Understanding personal experiences of the patients talcing treatment, and factors that
affect both at family and community level would help in planning an appropriate strategy
for effective prevention and control of the disease.
Aim:
To understand the patients perspective regarding TB treatment provided by the Bangalore
Mahanagara Palike under the RNTCP(Revised National Tuberculosis Control
Programme) using DOTS ( Directly Observed Treatment, Short course) approach.
OBJECTIVES:
1.
Assess the socio economic status of the patients.
2.
Gain an understanding of patients perception on TB
3.
Understand the treatment seeking behavior of the patients
4.
Understand the impact ofthe disease and the treatment on their lives and the adjustment
they need to make towards this.
Methodology
Patients under the RNTCP programme implemented through the Health Centers of BMP
(Bangalore Mahanagara Palike) would be identified. Information would be collected
using
in-depth interview and focus group discussion techniques. They wquld be
selected using the cross sectional method from among the urban poor.
As mentioned a meeting was held with the Medical Officer in -charge of the
Tuberculosis control programme with BMP( Bangalore Mahanagara Palike) and gained
an understanding of the programme. It is understood that the BMP has 7 TB units and
under each TB unit there are 5-6 Microscopic Centers spread around the city.. The
treatment is provided through about 132 health centers including the health centers of the
IPPVUI (India Population Project) A visit was made to all the 7 TB units and list of 701
patients who have registered with them during the first quarter that is from January to
March 2001 was procured. These are the details about the patients that are available, TB.
No. Date of registration, age, sex, Name of treatment center, category, type, status ( new,
defaulters, dropout and others. It decided with this information available, to select 100
patients and conduct an in-depth interview for understanding their perspectives.
Annexure
INTERVIEW GUIDELINEFORTHE TBPATIENTS
Socio economic status
Name, sex, age, occupation, income and educational status of the patient
Assessment of economic status through observation of the type of house and the
household things.
Information on TB
« What is the name of the disease that you are suffering from and how did you get to
know.
a
What do you know about this disease
* Why do you think that you got this disease
* Are there any other reasons for people getting this disease
<?« What do you think are the consequences if the disease is untreated and how long one
needed to take the treatment?
* Who are affected riiore by the disease male/ female rich/ poor/ poor young and old
why does it affect.
* Do you think this disease is communicable and how one can spread the disease to
others?
A
How does this disease affect marriage
3
Community/ family attitude
* What do your family members feel about you having the disease?
* Do any community members know that you have the disease if yes who and how did
they come to know
<?> What do the community members generally think about this disease
* What do people say is the reason for this disease
j
4 W'hat are the ways people say that one can be cured of this disease
Help seeking behavior and experiences
<s» What were your complaints in the beginning and what did you do
* When did you seek help (after how long) if sought late reasons
* Where did you seek help form (different places) and who referred you there and what
were your experiences.
* Who choice was it to visit a particular place, reasons?
* Name the places you went to before coming to this center in search of help
* Which are places that you visited for treatment or another help in relation to this
disease and what where your experience both positive and negative (staff altitude,
information given, time spent and the physical setting of the place)
What symptoms subsided after taking treatment and what symptom continued even after
taking treatment
*
* If visited more than one place reasons.
■?> How much money you would have spent so far for the following
a. Consultation
b. Investigation
c.
Prescription
d.
Speed money
When did you feel better?
•5#
* Influence of health education on knowledge about the disease and treatment
* Since how long you are taking treatment from the present place.
4
A
How did you come to this place?
* What information is given to you by the staff of this center about Tb and treatment
* What life changes have taken place after you came to this center
Cost of treatment including indirect cost like transport and loss wages
* How much time you need to spend for taking the medicines from the health center
i
* How far is the health center from your place
A
do you go to work on that day if gone to work how much money you would have
earned
* Does anyone accompany for treatment? if yes, who, and does this affect his/. Her
work, in what way
A
Do have any experience of giving money to any of the staff or staff demanding form
you and why
Influence of atmosphere of the place
A What you like most and least in the present place
A
Who do you like more in this place why and who you don’t like and why
Reference:
1.
A.J.Desai. Director RC,Bombay harbor project
2.
A.K.Chakraborty, Sheela Rangan, Mukund Uplekar, Urban TB control problems/
prospectives 1995 FRCH.
3.
Binayk Sen, MFC bull,105 Sep 1984
4.
Kalicharan Mathw, Tuberculosis treatment Management under private medical
practioners, Y2k Indian journal of Tuberculosis volume 47.49
5.
Mukund Uplekar and Sheela Rangan,“Tackling TB” the search of solutions
FRCH 1996
6.
M.W.Uplekar, A.S.Vadair, S.G.Rangan, S.D.Parande, S.K.Juvekar, D.b.Dalal and
S.S.Khanvilkar, Tuberculosis management in private practice and its implications,
Tuberculosis Journal oflndia 1996 volume 43.19
7.
Marie D’souza, Background.paper,MFC annual meet 1985
8.
Prabir Chatterjee, review of'RNTCP, MFC bull 250.51
9.
S.G.Rangan and M.uplekar Y2k Social Cultural Dimension in TB control an
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5
10.
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11.
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Sanjay Juvekar, M.W. Uplekar, S.N.Manohar, D.B.Dalal, S.G.Rangan,
S.S.khanvilkar S.A.Vadair and A.Deshpande, Social and operational
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13.
T.Narayai], a study of policy process and implementation of the NTCP in India
thesis for the doctoral programme
14.
U.N.jajoo, background paper, MFC annual meet 1985
6
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Io/ 7 /
A study on Patients perspectives regarding TB treatment under
RNTCP in Bangalore Mahanagara Paiike
’ s"s tr O d 55 € i i w a i
Magnitude of the problems caused by tuberculosis in India and worldwide is
well documented. Resurgence of TB made WHO declare it a global emergency
in 1-993. .'tuberculosis is among the most effective and cost effective of all
diseases.to treat yet it had to be declared as Global emergence..(WHO) ? •
...
■ • •
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TB control has been a challenge unmet in India despite the fact that NTP
was in place over three decades and was revised due to global pressure. In
India it is estimated that about 1440 people die of tuberculosis every day. It
is also well known that this disease affects the poor more.-asd It is also
evident that the poverty status in India is further affected adversely by
globalization policies. Links with Poverty has been explicitly acknowledged in
the 1940 health policy and later it was liidden wider the category sociological
problems^ A number of researches have been conducted in search of a
solution and a number of projects been piloted for understanding effective
implementation strategies in prevention and control of the disease.
u4e-ebserved--that 'Elie prevalence, is evenly distributed among both, the rural
and urban population. It is well kwon that the poor seek help from more thari'1
one place due to various reasons and this adversely affected treatment
outcome and the patient's pocket. Information on health seeking behavior
and the patients' perspective regarding the treatment has already been
studied in other parts of India especially in Maharashtra, and it is hoped that
tliis study would bring in more insight in understanding TB treatment from
patient's perspective.
(Problem statement
It is well known that TB is associated with poverty, .illiteracy, malnutrition
and over-crowding. Treatment of TB puts on an enormous physical.
economical, psychological, and social pressure on the patient particularly the.
poor patient and his or her family. What bothers most people suffering from
TB is their cough, chest pain, and fever^loss of weight and body ache. It is
least of their concerns that they are excreting the bacilli in sputum and are
infecting others. There were instances when TB patients said that they just
wanted to die due. to depression and in other instances the patients had to
sell their valuables to pay fit'for the treatment. It is estimated that on an
average a TB patient spends about 51500 rupees for treatment apart from
transport and other indirect costs. As TB affect more the young and the
1
w
adults in the productive age group, the economic loss to the nation is
calculated as 1000 crore man-hours.
Most of the TB patients seeks first help from a private practitioner chiefly
because they are easily accessible and available. Normally they approach
within two weeks after developing chest symptom and most of them are sent
away with cough mixtiu’es. Affordability is a question that arises later
during treatment,, which is one of the main reasons that force the poor TB
patients to become irregular in treatment for some time. Some of the. other
reasons lor discontinuing' treatment arei priorities in the family, feeling well,
cannot leave work and come for treatment, unavailability of drugs in the
center when approached, side effects, staff attitude and distance. Poor
nutrition, strong medication and alcohol caused side effects such as nausea
and dizziness; also prevents a lew patients from continuing treatment.
Finding of a study revealed that patients who stayed beyond 5 kins from the
health centers were irregular with treatment. The support available,both
family and community level to a person suffering from TB for enabling
min/ner complete treatment is insignificant. Besides these the problem of
stigma still persists and has its negative impact. TB patients face rejection by
neighoors, employers and coworkers, \oung brides who developed symptoms
are returned to their homes as unfit to bear children, their dowries forfeited.
As a result of these problems many of them become MDR (Multi Drug
Resistance), MDR means more a death trap to person who has defaulted
treatment. Cost of treating MDR is 100 times more. If dropped from
treatment uue to tliis factor, the consequences are that the loss to the family
irt incalculable and the patient would have transmitted the disease to many
other people at least 10 to 15,before their death. It is 30 years since a new
drug has been brought into market and the chances in the near future are.
very remote. Understanding personal experiences of the patients taking
treatment, and factors that affect both at family and community level would
help in planning an appropriate strategy for effective prevention and control
of the disease.
Aim:
To understand the patient’s perspective regarding TB treatment provided by
the Bangalore Ivlahanagara Palike under the RNTCP (Revised National
Tuberculosis Control Programme) using DOTS (Directly Observed
Treatment. Short- course) approach.
OBJECTIVES:
Primary
1.
Gain an understanding of the patient perception on TB Treatment, among
the urban poor people.
Secondary
1.Understand ihe treatment seeking behavior
2.Understand the impact of the disease and their treatment on their lives and
the adjustment they nee', to make.
iVi
Ho av
Patients under the RNTCP programme implemented through the Health
Centers of BMP (Bangalore Mahanagara Palike) would be identified.
Information would be collected using
in-depth interview technique.
They would be selected using the cross sectional method from among the
urban poor.
-\s._meniioned a meeting was held with the Medical Officer in -charge of the
Tuberculosis control programme with BMP -(Bangalore Mahanagara Palike)and gamed an understanding of the programme. It-is. understood that theBMP has 7 TB units and under each TB unit there are 5-6 Microscopic
Centers spread around the city. rl he treatment is provided through about 132
health centers including the health centers of the 1PPV111 (India Population
Project),a*visit was made to all the 7 TB units and list of 782 patients who
have registered with them during the first quarter that is from January to
March 2001 was obtained.
Following are the details that were available about the patients: TB. No..
Bate of registration, age, sex, Name of treatment center, category, type,
status (new, defaulters, dropout and others). The information was fed into
the computers and using the Microsoft Excel programme the data was sorted
using the following three key variables: age, sex and type. The data was
further sorted according to age, wlrich was divided into, to four categories viz;
0- 5 years, 6-18 year’s, 19 - 45 years and 45 years and above. From this
category every eighth person was selected applying a simple random
technique. 97 patients’ names were selected and added 14 patients from the
0-5 categories making trie final list of patienl? selected for the study to 111. It
3
was decided to select all the 11 children below the age of 6 years to cover
under the study as the number available after applying sampling technique
,-o. would too less to represent.
Guideline for the interview
1. Knowledge about the disease
*
What is the name of the disease for which you are/ were getting treatment ■
What do you know about this disease?
Who are more affected by this disease male/ female.; rich /poor; children/ adult/ old
people.,
*
Any reason why they are affected more
How is tile disease spread?
2.
Help seeking behavior
*
How did you find out that you had this disease?
What were your initial complaints? What did you do?
*
What made you seek treatment? When? Where?
*
Narrate your experience
If tliei e v» as delay in seeking treatment what wore the reasons?
Whnt 112-id? you coino to this contra?
How long have you been taking treatment from this centre?
How have you to take treatment?
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What symptoms have subsided? What symptoms are persisting?
How do you feel generally now?
L^iK, CjV»
What would happen if the disease not completed treated?
Family
Does this disease affect your married life? Family life?
’..0
.
<iWhat.your family members feel about your having this disease? What support.you get
from your family with regard to treatment? What are the changes you had to make?
Do you nave a child less than 2 years old? Do you breastfeed the baby? If you stopped
breastfeeding why?
Does any of your family have this disease? What has he/ she has done about it?
Community
Do the members of the community know that you have this disease?
What do the community members think about this disease?
k
What support .you get from the community member with regard to your treatment?
Do they accept you as member of the community? Whole heartedly1—1 grudgingly 1—1
Do you know of any other member of the community having this disease? What, has
liv /she done about it.
How much money have you spent for the following;
a Consultation
b. investigation
c. medicines
*'
Others sp^ciiv
How did you get the money for the treatment?
Family income sufficient; borrowing (from whom)
Has any of the slitlfof the venter demanded money? Taken moneyV f
6.
Work and treatment
*
Have been away from work because of tiiis disease? (During treatment)
If yes, for iiow long?
Are you able to continue the work s before the symptoms started?
Does the treatment affect your work? Rejection by employer? Co-worker?
7.
Distance and tima
How far is the health center from your place?
*
How do you go to the centre?
Does any one accompany you when you go for treatmem? Does it affect his/ iter work?
8,
Satisfaction
*•'
What did your like best in the centre? Why?
*
What did you like least in the centre? Why?
*
Was the staff courteous? Very much 1---- 1 to some extent 1---- - not at all 1---- 1
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Were there any side effects? Were they attended to?
Did yon have to discontinue treatment at this centre? Why?
Would your recommend your relative/ friend to attend this centre if he/she had this
disease?
Any suggestion for improvement?
Any other matter
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