Improving Patient Adherence to Tuberculosis Treatment
Strategies for Improving Adherence
Directly observed or supervised therapy (DOT) is one method of
ensuring patient adherence (18). DOT is defined as "observation
of the patient by a health care provider or other responsible person
as the patient ingests TB medications" (19).
CDC and the American Thoracic Society recommend that DOT be considered
for all patients because of the difficulty in predicting whether
a patient will be adherent. Base decisions about the use of DOT
in any particular treatment setting on a quantitative evaluation
of local rates of treatment completion. If the percentage of patients
who complete therapy within 12 months is <90% or unknown, initiate
or expand the use of DOT.
In any situation, consider extending the use of DOT to improve
the completion rate. All patients with TB caused by organisms resistant
to either INH or RIF and all patients receiving intermittent therapy
should receive DOT (18). Also, persons who are at high risk for
nonadherence should receive DOT:
- persons who abuse substances
- persons with mental, emotional, or certain physical impairments
that interfere with their ability to self-administer medications
- children and adolescents
- persons with a history of treatment nonadherence
To be effective, DOT must be part of a program of services. For
example, the DOT program initiated in 1992 in New York City provides
supervision in community settings convenient to patients, incentives
and enablers to encourage patients to take medications and reduce
barriers to adherence, assistance with housing for homeless patients,
a system to track patients through hospital discharge planning,
and a method of tracking inmates released from jail or prison (20).
A successful program in Tarrant County, Texas, included specially
trained community-service aides; transportation of patients to clinics;
delivery of drugs to the patient's residence, workplace, or other
convenient site; and intermittent regimens after an initial period
of daily treatment.
The many examples of successful DOT programs typically incorporate
a comprehensive array of services that include a team of health
providers to provide continuity of care, case management, and follow-up;
service settings that are convenient for patients; practices that
are acceptable to patients; and additional social or health services.
A committee convened by the American Lung Association (ALA) gave
the following broad definition of a DOT program: a DOT program is
a comprehensive combination of patient-focused services in which
the health care provider
- observes the patient swallowing medicine
- enables patients to keep appointments
- offers incentives to encourage adherence
- establishes efficient clinic systems for scheduling appointments,
keeping records, and providing pharmacy services
- provides careful case management and continuity of care through
the use of a team of personnel whose members work together to
assist each patient in completing treatment
- provides patients with needed health or social services, or
makes referrals to other appropriate service agencies
- provides effective education to patients and key individuals
in the patient's social environment
- communicates effectively with patients whose cultural and linguistic
backgrounds are different from the health care worker's (see Working
with an Interpreter).
Pozsik described strategies used in a DOT program established by
the South Carolina TB control program. The following are her recommendations
- Staff must recognize DOT as their standard of care and convey
this with confidence to patients.
- The patient and provider must mutually agree on the location
for DOT; the time and location need to be convenient and safe.
If the patient cannot go to the treatment center, the staff must
go wherever the patient can meet them. DOT must not interfere
with the patient's work schedule. Sometimes staff at other health
care settings, such as hospital emergency rooms, can be asked
to help deliver DOT to a patient who has easy access to that location.
- It is important to protect the patient's confidentiality. For
example, the patient may prefer that you not let neighbors know
why you are visiting.
- Sometimes, the staff may designate another person to watch the
patient take medications. Pozsik warned that it is not desirable
to delegate this responsibility to the patient's family members.
Because of the emotional ties some family members have with the
patient, the family may be unwilling to ensure that the patient
takes the medications when the patient resists treatment. However,
others, such as school or employee health nurses, work supervisors,
clergy, or other responsible persons who do not have strong emotional
ties with the patient can sometimes provide DOT.
- Be aware of techniques patients may use to avoid ingesting medication,
such as hiding pills in the mouth and spitting them out later,
or vomiting the pills after leaving the treatment center. To ensure
that the patient swallows the pills, you may have to check the
patient's mouth or ask the patient to wait a half-hour before
leaving the treatment center so the medication can dissolve in
the patient's stomach.
Show the patient that DOT can be effective by using testimonials
of previous patients. Ask a "graduated" patient who had
problems that were similar to your patient's to describe how DOT
has worked to help with completing treatment.
Some health care providers think of DOT as a way of punishing the
patient. This is a reason the provider may not want to use DOT.
Unfortunately, it may also be a reason other providers want to use
DOT; that is, they may blame the patient for having TB or for being
from a group that is vulnerable to TB, such as HIV-infected, homeless,
or foreign-born persons. Think of DOT as a positive service to help
your patients complete therapy. To provide DOT positively, tell
your patients how it will help them.
Tailor DOT to your patient's particular needs and circumstances.
As much as possible, encourage your patients to participate in planning
the treatment strategy. For example, they may decide to take medication
daily, twice a week, or three times a week; determine the location
for DOT; or choose the types of incentives and enablers that they
receive. The plan should account for other pressing needs in the
patient's life that compete with DOT.
Be creative and flexible in determining how your patients can best
be brought into planning their own treatment. For the DOT program
to be effective, it needs to be carefully planned and organized,
and staff need to be trained, managed, and monitored in their delivery
of this service.
There is no manual describing exactly how to set up or conduct
a DOT program. Programs come in a variety of forms, although many
include the activities outlined by the American Lung Association
(p. 20). Ideally, every DOT program will be tailored to the specific
characteristics of a treatment center and the patients it serves.
Until there is research that evaluates different types of DOT programs
and identifies the best type of program, treatment centers are urged
to follow the general principles summarized in this section.
Selecting incentives and enablers. Incentives
and enablers are widely used to encourage treatment adherence in
facilities providing TB services. Incentives are defined as "small
rewards given to patients either to encourage them to take their
own medicines or to entice them to maintain regular clinic visits
or field visits for DOT. Enablers are those things that ‘enable'
the patient to receive treatment" (22).
Tailor incentives and enablers to your patient's special needs
and interests. Choose them carefully to motivate your patient to
carry out the activities necessary to complete treatment. Learning
as much as you can about your patients will help you identify the
needs and interests that are important to them. An appropriate time
to begin using incentives and enablers is after you have established
a relationship with your patients.
Barriers to using incentives. Health care workers
disagree on the appropriateness of using incentives. Your attitude
about using this intervention can enhance or detract from its effectiveness.
Some health care workers consider incentives inappropriate because
they believe that patients should want to get well and should accept
treatment as an obligation to themselves and their community. They
believe that incentives are bribes.
At times your patients may also feel that you are attempting to
bribe them into accepting treatment. This situation is more likely
to occur when you have not established a trust relationship with
them and have introduced incentives before you have gotten to know
the patients. In most instances, when you use incentives as an expression
of caring and concern for your patients' well-being, the likelihood
that your actions will be misinterpreted will decrease. Above all,
remember that the reason for using incentives is to motivate the
patient to complete treatment.
Obtaining incentives and enablers. Incentives
and enablers can come from a variety of sources. The Division of
Tuberculosis Control, in the South Carolina Department of Health
and Environmental Control, has used incentives and enablers for
a number of years (see table 1). Staff have used the following approaches
to accomplish this goal:
- Acquire funding from the state chapter of the American Lung
- Obtain funds from local sources, e.g., church groups.
- Ask businesses to help with special needs, e.g., food and food
- Recruit persons who can contribute time and skills to perform
certain activities, e.g., baking cakes and cookies.
- Spend more time with the patient.
Other programs have used different incentives and enablers. The
Multnomah County TB clinic in Portland, Oregon, solicited donations
from area businesses to enhance their incentive program, which was
funded by the American Lung Association of Oregon. Donations were
solicited by mail. Particularly popular donations were
- recently expired or soon-to-expire dietary supplement (Ensure)
from a pharmaceutical supply company
- pillows and blankets from a hospital (useful to newly arrived
- food coupons from area restaurants
- athletic shoes and clothes from an area manufacturer
The North Carolina TB control program paid the rent for a family's
house for 1 month to avoid eviction and possible disruption of therapy.
Keep in mind that "the essence of this program is not what
you bring to the patient, but how you bring it that makes a difference
in your relationship and the outcome of treatment" (22).
Table 1: Incentives and Enablers: South Carolina
TB Control Program
Patient education that is well planned and combined with other
interventions is essential for ensuring adherence. However, patient
education alone has not been successful in improving adherence.
It should be used in conjunction with other interventions. The goal
of patient education is to influence or change patients' health
behaviors by providing them with information that motivates them
to follow the treatment plan (23). Bartlett recommended making a
"behavioral diagnosis" for each patient and incorporating
both instructional and behavioral strategies into each patient's
care plan (24). (See table 2 for an adaptation of this approach.)
Table 2: Behavioral Diagnosis: Tool for Enhancing
Adherence to TB Treatment
Providing effective patient education is a challenge for health
care providers. First, all people go through distinct stages of
learning when they make major changes in behavior, such as taking
medication every day. To be meaningful, health information must
be appropriate for each patient's stage or level of education and
readiness to change (25). For example, persons who do not know they
are at risk for TB may not be aware of or concerned about the need
for a tuberculin skin test, or they may be afraid of the skin test
Some people may ignore individualized instructions to get a tuberculin
skin test; others may be influenced only by highly persuasive public
messages designed for their reference (e.g., ethnic) group. It seems
that when people become concerned about their risk for TB, they
then become interested in more specific information about how to
obtain a skin test. Hence, education is an interactive process (26).
As part of patient education, tell your patients that you understand
that they may have difficulty staying on the medication regimen
and help them devise strategies to deal with potential adherence
problems. Patients are more likely to pay attention to information
when it is relevant to their needs and does not require abrupt changes
in their behavior. Patients seem to adapt to changes in daily activities
more easily when changes are implemented gradually. The treatment
plan may be particularly challenging for patients since many of
the treatment methods (for example, DOT) are started abruptly.
Patients may be more likely to follow the treatment plan if they
understand their illness and the benefits of treatment. Patient
education plans should include information on several topics:
- patient concerns about the disease, treatment, and follow-up
- cause of TB
- how TB is transmitted
- diagnostic tests and the meaning of the results
- treatment recommendations
- infection control measures
- follow-up tests and medical evaluations
- contact testing and evaluation
- possible problems (such as what can go wrong with treatment
and follow-up care)
- expected benefits of adherence
- expected consequences of nonadherence
Before you begin teaching patients about TB, assess their knowledge
of these topics. If they have some understanding of the disease
and its treatment, focus on reinforcing accurate information and
correcting misconceptions and information gaps.
In presenting the information, keep in mind several points. Use
simple, nonmedical terms in your explanations and be specific about
the behaviors you expect. For example, it is much more helpful to
say, "You need to take one of these pills every evening"
than to say, "This drug, isoniazid, is a bactericidal agent
that is highly active against Mycobacterium tuberculosis."
Use familiar words in your patient's language or use slang to make
the information relevant.
Limit the amount of information you present in any one visit. If
you attempt a large amount of information, your patients may feel
overwhelmed and may retain very little of the information you give
them. To avoid this situation, before each teaching session, organize
your topics in the order of their importance. In the first session,
discuss the most essential topics, including the naming of contacts,
in the event the patient is lost to follow-up care. The patient
remembers the information presented first more easily than the information
presented later. Thus, it is better to discuss the behaviors expected
of the patient before explaining the basis for the diagnosis and
the prognosis. For example, early in the initial session, you might
say, "The most important thing you need to know to get well
is that you must take four of these capsules every day."
In later sessions, start by reviewing information you have given
before. For example, you can introduce this topic by saying, "As
we discussed last time...." These reviews reinforce information
and can be used as key points. Remember, communication with your
patient should always be two-way; that is, elicit feedback and questions
from the patient to ensure that the message sent was received and
understood. Use open-ended questions to make sure the message has
Provide patients with written information. Because patients may
forget oral instructions, give them written instructions or basic
TB literature. Messages in writing, such as "Take two Rifamate
capsules every morning when you get out of bed," reinforce
the instructions and increase retention.
Gear the written material to the reading level of your patients.
For foreign-born patients who read and speak no English, write the
instructions in their native language or use pictorial instructions.
For U.S.-born patients who do not read, pictorial instructions can
also be useful. Some of these patients may pretend to read by repeating
information they have heard. It is important that you not embarrass
your patients by confronting them. You can, however, reinforce the
message by drawing a picture (e.g., of two pills).
Initiate open discussions with your patient about the treatment
plan, including his or her responsibilities as well as yours. At
the start of treatment, tell your patient about nonadherence and
its effect on the therapeutic outcome and further TB transmission.
Listen to the patient's response and identify and resolve any barriers
to adherence. For example, you can correct misinformation, reduce
side effects by splitting doses or giving drugs at different times,
or provide easy-to-open containers (without safety locks).
If the patient comes from a cultural background that includes the
use of folk medicine, determine whether there are cultural barriers
to biomedical practices. Sometimes patients seek medical advice
from folk healers in their own culture. In some instances, patients
may use folk remedies in conjunction with prescribed medications.
For example, in some Asian cultures, TB medicines are considered
"hot" and need to be countered with something "cold,"
such as green leafy vegetables. A discussion about folk beliefs
and practices may help you to individualize treatment so that it
is acceptable to the patient.
When folk medical practices are safe, consider including them in
the treatment plan. For example, some people believe in the healing
powers of prayer. These persons may be more willing to take medications
after saying a brief prayer when you accept that their belief in
prayer is an important aspect of treatment.
Patients make independent decisions every day about whether they
will take medication or show up for DOT. You must recognize the
patient's important role in making decisions about treatment. Develop
a partnership with your patient. Effective partnerships require
specific behaviors from you (26):
- Treat patients with dignity and respect.
- Hire staff from your patients' communities.
- Communicate clearly so that patients can understand your messages.
- Avoid criticism, however subtle, of the patient's behavior.
- Be open-minded about the patient's beliefs and cultural expectations.
- Listen and try to understand the patient's perceptions, attitudes,
and beliefs about TB.
- Avoid imposing on the patient your values about medical treatment.
- Understand and fulfill your patient's expectations about treatment,
- Reduce as much as possible the distance created by social, economic,
or cultural differences between you and the patient.
- Recognize and address your patients' fears about the illness.
- Be consistent in what you do and what you tell the patient.
- Educate staff about the beliefs and expectations of the communities
The support and assistance of family, friends, and health care
workers can be critical to whether patients complete their treatment.
Talk with your patients to identify family members, coworkers, or
friends who will support them and your recommendations. Other people,
such as a spouse, parent, child, or teacher, may be able to help
the patient remember to take medications. Landlords, ministers,
bartenders, security guards, neighbors, and many others have effectively
Family members may be included in educational sessions so that
they also understand the patient's diagnosis and what the patient
needs to do. However, avoid making a family member responsible for
the patient's adherence. This may be an unfair and complicated burden.
On the other hand, elders, spouses, or others in authority in the
family or community may prevent patients from taking medications
or may reject or stigmatize the person with TB disease or infection.
If this is a problem, it is essential to involve these persons by
providing educational counseling about TB and including them in
discussions about treatment decisions. Always maintain the patient's
Individualize the medication regimen to improve adherence. If possible,
simplify and restructure the regimen within acceptable therapeutic
limits to coincide with the patient's lifestyle. For example, prescribe
intermittent regimens, determine a time of day that is convenient
for the patient to take medications, or schedule clinic appointments
for DOT at times that are convenient for the patient. Some patients
find it useful to monitor pill consumption by checking off doses
on a daily calendar.
For some patients, a formal, written adherence agreement — a health
contract between you and your patient — may be useful. Your patients
should dictate or write in their own words the activities they agree
to carry out (such as "take medicine as prescribed"),
possibly in return for specific services or incentives from you.
List also the activities your patient can expect from you. For some
patients, this written commitment increases the likelihood of adherence.
Ask your patients to sign the contract next to your signature and
give them a copy to keep. Review the contract with your patient
periodically to assess how well the two of you are doing and to
make changes as needed.
Different types of reminders can improve appointment keeping. If
your patient has a permanent address, it can be useful to send a
postcard reminder, mailed so that it arrives 1 or 2 days before
the scheduled appointment.
If the patient has a telephone, calls may be preferable because
they remove any doubt about whether the patient received the message.
Another benefit of using the telephone reminder is that it gives
you an opportunity to counsel patients over the telephone and help
them overcome scheduling and transportation problems and other obstacles
Commercial telephone reminder systems automatically call a patient's
number and give a recorded message. An example of this type of system,
called TeleMinder-TBC, was used with some success in one study conducted
by the San Francisco TB control program.
If a clinic has a chronically low attendance rate, it is important
to assess clinic operations, identify barriers to appointment keeping,
and make the necessary changes. Clinic visits should be scheduled
at times that are convenient, and they should be as brief as possible.
Identify and help solve any problems with clinic operations that
cause unnecessary delays for patients.
Persons who fail to keep an appointment should be telephoned promptly
to schedule a new appointment. If the patient fails to keep the
new appointment, an outreach worker or a nurse should visit the
patient at home. This visit should be used to counsel the patient
and to identify and solve problems that interfere with appointment
If the patient repeatedly breaks appointments, conduct a case conference
attended by all members of the health care team (physician, nurses,
outreach workers, and other staff) so that all pertinent information
can be considered and the entire staff can contribute to the solution
to the problem. The patient may also be included in this conference.
A combination of strategies may be required to deal with the chronically
nonadherent person, and legal alternatives may be needed (see
Some TB treatment centers offer comprehensive services and take
a holistic view of patients' needs. These centers use a combination
of methods to address treatment adherence. They include DOT as part
of their strategy. One of the earliest comprehensive programs held
clinics at times and places that were convenient (based on surveys
of patients and community leaders), changed appointment schedules
to reduce waiting times, referred persons who needed social services,
scheduled nurses to make home visits to patients who missed appointments,
educated community groups and health department personnel about
the need for specialized services, and established health care teams
that worked well together and held positive views of their patients.
After 5 years of the program, missed appointments decreased from
34% to 6% (27).
Other effective comprehensive programs have included well-integrated
medical teams, a system of coordinating with other community resources,
and incentives or enablers such as food, transportation, or additional
medical services. Another successful clinic employed a pulmonary
nurse specialist and a nurse epidemiologist to provide careful case
management. The nurses attempted to establish strong relationships
with patients and to understand their beliefs about TB. Scheduled
appointments reduced waiting time, and patients were reminded of
appointments for the following day and received a visit closely
following missed appointments. Patients were given money for transportation
and were referred for assistance with social, financial, and other
medical problems as needed. Treatment was simplified by using combination
capsules containing two drugs (28).
In general, comprehensive services include
- teams of personnel who assume responsibility for continuity
of care, careful case management, and follow-up
- clinic times and locations that are accessible and convenient
- provision of health or social services to patients
- short-course treatment regimens that include supervised therapy
This type of service has been shown to improve treatment success
even with patients who typically would not complete treatment (3,