Self-Study Modules on Tuberculosis
Module 9: Patient Adherence to Tuberculosis Treatment
Patient Adherence to TB Treatment
What is Adherence to Treatment?
Adherence to treatment means that a patient is following the recommended course of treatment by taking all the prescribed medications for the entire length of time necessary. Adherence is important because TB is nearly always curable if patients adhere to their TB treatment regimen.
What is Nonadherence?
Nonadherence is the patient's inability or refusal to take TB drugs as prescribed. When medical treatment is complicated or lasts for a long time, as in the treatment for TB disease, patients often do not take their medication as instructed. This behavior is one of the biggest problems in TB control and can lead to serious consequences. A nonadherent patient with TB disease may
- Remain sick longer or have more severe illness
- Spread TB to others
- Develop and spread drug-resistant TB
- Die as the result of interrupted treatment
It is also important that persons with latent TB infection (LTBI) who are prescribed a regimen for LTBI adhere to the regimen. Completion of therapy for LTBI can prevent people with TB infection from developing TB disease.
Reasons for Nonadherence
There are many reasons why a person might have trouble completing a regimen of TB drugs. Here are a few examples:
- Once patients no longer feel sick, they often think it is all right to discontinue taking their TB drugs. TB symptoms can improve dramatically during the initial phase of treatment (the first 8 weeks). However, unless patients continue treatment for at least 6 months, some tubercle bacilli may survive, putting patients at risk for a relapse of TB disease and the development of drug-resistant organisms.
- Patients sometimes do not fully understand the treatment regimen, how to take their drugs, or the reasons for the long duration of TB treatment. This lack of knowledge can lead to an inability or lack of motivation to complete a regimen.
- Some patients have strong personal or cultural beliefs about TB disease, how it should be treated, and who they can turn to for help. When TB treatment conflicts with these beliefs, patients can become fearful, anxious, or alienated from their health care workers (a person who provides health care or health services to patients, such as physicians, physician's assistants, nurse practitioners, nurses, and outreach workers).
- Certain patients lack skills necessary for following a health care worker's instructions and adhering to a prescribed regimen. Elderly patients with limited mobility or manual dexterity, patients with substance abuse or mental health problems, and young children are particularly at risk for problems with adherence.
- Lack of access to health care can also be a significant barrier to successfully completing a TB regimen. Special efforts must be made to reach and provide care to patients without a permanent address or a means of transportation. Patients with jobs may have work schedules that conflict with clinic hours. Immigrants and refugees, as well as persons who inject illicit drugs, may need reassurance that their TB disease and treatment will be kept confidential and should not cause them legal problems.
- Some patients, especially recent immigrants, may not be able to find a health care worker who speaks their language. When a patient speaks little or no English, this language barrier can present significant problems for adherence, as patient education and support services can have little effect. Unless a good interpreter is found, such patients may be unable to continue treatment.
- Some patients have poor relationships with health care workers. When patients and health care workers fail to establish a trusting relationship, this lack of relationship can influence patient adherence. If a patient trusts or has confidence in his or her health care worker, he or she is more likely to follow instructions and advice and to cooperate with the health care worker. Patients may also be more likely to bring questions and concerns regarding adherence to the health care worker's attention.
- Finally, some patients may have a lack of motivation to adhere to a TB regimen. If patients have many competing priorities in their lives such as substance abuse, homelessness, sickness from other diseases (e.g., HIV), taking TB medication may not be considered a priority by the patient.
Each patient is unique and may have his or her own reasons for nonadherence. One of the best predictors of adherence is a patient's past adherence. If a patient was nonadherent in the past, it is likely that he or she will encounter similar problems with the current treatment regimen. However, it is important to keep in mind that any patient can have problems with adherence. Barriers are anything that can prevent a patient from being able to adhere to a TB treatment regimen. Many health care workers think they can tell which patients will be adherent, but research shows they are correct only about half the time (that is, their predictions are no better than flipping a coin). Although adherence is hard to predict, the more the health care worker knows about the patient, the better he or she will be able to understand and address the patient's problems.
Patients and health care workers are both responsible for ensuring
patients' adherence. Patients must decide every day or week whether
or not to take their medicine. What they decide often depends on
how much help they get from the health care workers they see.
|Study Questions 9.1-9.6
9.1. What is adherence to treatment?
9.2. Why is adherence to TB treatment important?
9.3. What are four serious consequences that can result when a patient with TB disease is nonadherent?
9.4. Give eight reasons why a patient might be nonadherent.
9.5. Explain why a patient's adherence to a TB treatment regimen is difficult to predict.
9.6. Whose responsibility is it to ensure adherence?
What is Case Management?
There are many strategies that may be used to ensure that patients complete treatment. One strategy that may be used is case management. There are three elements in a case management system:
- Assignment of primary responsibility for the patient
- Systematic regular review of patient progress
- Plan to address any barriers to adherence
A health department employee (case manager) is assigned primary responsibility and is held accountable for ensuring
- Each patient is assessed and a treatment plan is established
- Each patient is educated about TB and its treatment
- Therapy is continuous
- Contacts are examined (see Module 6, Contact Investigations for Tuberculosis, for information on conducting contact investigations)
Although one person is assigned primary responsibility, case management provides continuity of care by using a team of persons who work together to help each patient complete treatment. Some specific responsibilities such as the patient interview, directly observed therapy (DOT), and patient education may be assigned to other persons (e.g., clinic supervisors, outreach workers, health educators, and social workers).
Case management uses a combination of patient-focused services in which the case management team performs the following tasks:
- Assesses the patient and develops a treatment plan
- Provides DOT
- Provides effective education to patients and key individuals
- Establishes efficient clinic systems for scheduling appointments, keeping records, and providing pharmacy services
- Helps patients keep appointments
- Communicates effectively with patients whose cultural and language backgrounds are different from their own
- Offers incentives and enablers to encourage adherence
- Provides patients with needed health or social services, or makes referrals to other appropriate service agencies
- Establishes a trusting relationship with the patient
Getting to Know the Patient
The health care worker will need to learn as much as possible about the patient in order to assess potential adherence problems. The health care worker will need to learn about the patient's
- Medical history and current health problems
- Knowledge, beliefs, and attitudes about TB
- Ability to take responsibility for following the TB treatment plan
- Resources (family, other social support, finances)
- Barriers to treatment
- History of adherence to previous TB regimens or other medication
This information can come from different people or places. Often, TB health care workers first find out about patients with active TB from health care workers in other health care settings such as doctors' offices, hospitals, prisons, jails, homeless shelters, nursing homes, and other public health clinics.
Although the information from these other sites is important, TB health care workers usually do an additional assessment. Doing an assessment means talking to a patient to find out about his or her medical history, knowledge about TB, feelings and beliefs about TB treatment, and information on the other points listed above. A particular emphasis is placed on identifying the problems most important to the patient as treatment begins. Because TB treatment often begins abruptly, patients may have difficulties changing their behaviors as expected. Unless special efforts are made to identify patients' needs, some patients may be lost to follow-up care.
The health care worker or other program staff should visit the patient to begin the assessment as soon as possible. If the health care worker is assigned to work with a hospitalized TB patient, he or she should visit before the patient leaves the hospital. If the patient leaves the hospital before the health care worker can get there, he or she should visit the patient at home as soon as possible. Health care workers should remember to follow infection control precautions while visiting a potentially infectious patient. These precautions may include using a personal respirator.
During the first meeting, the health care worker should get to know the patient, educate the patient about TB, learn the names of the patient's close contacts so a contact investigation can begin, and look for factors that may affect the patient's adherence to treatment. The information the health care worker finds out in this meeting is confidential; he or she should follow the agency's or clinic's rules for keeping patient information confidential (see Module 7, Confidentiality in Tuberculosis Control).
The health care worker should discuss the treatment plan with the patient. At the start of treatment he or she should tell the patient about nonadherence and how it causes treatment failure and further TB transmission, then listen to the patient's response and identify and resolve any barriers to adherence. For example, the health care worker can correct misinformation, reduce side effects by giving drugs at different times, or provide easy-to-open containers (with no safety locks). Remember, any changes in the TB regimen must be approved by the supervisory clinical and management staff.
When the health care worker begins to work with a patient, it is important to ask what the patient understands and believes about TB disease and treatment. If the patient does not understand the importance of finishing treatment, adherence will be very difficult. Therefore, the health care worker should identify differences between what he or she believes and what the patient believes early in treatment. That way, the health care worker will have time to address the patient's concerns and needs, correct any misconceptions, and provide the necessary education.
Open-ended questions. One way that health care workers can learn about the differences between a patient's beliefs and their own beliefs is to ask several open-ended questions. An open-ended question is one that cannot be answered with a simple "yes" or "no." Open-ended questions are designed to elicit the patient's knowledge, feelings, and beliefs by beginning with words that demand an explanation, like
In addition, phrases that begin with "Tell me about" or "Explain to me" may be helpful in eliciting information from the patient. Such questions are used when a health care worker needs to explore complex issues that do not have a finite or predetermined set of responses.
The questions in Table 9.1 have been used by some TB programs to assess TB patients' knowledge, beliefs, and attitudes regarding TB, and adherence to TB medicine. They may help the health care worker better understand the patient's views and suggest areas in which the patient needs education. They may also give the health care worker some idea of the patient's ability to adhere to a treatment regimen. For example, asking a patient what problems the illness has caused him or her can help the health care worker assess important factors such as the strength of family and social support; potential job-related problems; and, to some extent, the problem-solving skills of the patient. Table 9.1
Examples of Open-Ended Questions for Patient Assessment
- What do you know about TB?
- What causes TB?
- What do you think TB does to your body?
- How severe do you think your illness is?
- What problems has your illness caused for you?
- Why do you think you got sick when you did?
- What treatment do you think you should receive for TB?
- What are the most important results you hope to get from this treatment?
- What do you fear about your illness?
- How do your family members or close friends feel about your TB?
- How do you feel about taking your TB medication?
- What caused you to go to the doctor who diagnosed your TB illness?
- What did you think when you were told you had TB?
- How do you think you got TB?
- What are some difficulties you have taking medicine?
Open-ended questions such as these are very useful during the initial health assessment and later during other interactions with the patient during the course of treatment. Throughout treatment, the health care worker should ask the patient about his or her concerns about TB and adherence to the TB regimen. The questions listed in Table 9.1 are a starting point only. Whenever possible, the health care worker should adapt such questions according to the patient's age, family situation, education level, and cultural background. Remember that the more the health care worker is aware of the patient's ideas and concerns about TB and its treatment, the better prepared the health care worker will be to anticipate and resolve problems that can arise.
Trust. It is important that the patient be able to trust the health care worker. The patient will feel comfortable sharing his or her thoughts if the health care worker
- Listens carefully to the patient and pays attention to hesitations, inconsistencies, or strong emotions
- Speaks openly, honestly, and politely about differences in ideas; corrects the patient's misconceptions tactfully and allows time for questions if he or she doesn't understand fully
- Shows the patient proof of what is being said, such as chest x-rays or laboratory reports, whenever possible
- Involves the patient in the development of the treatment plan and is flexible in meeting the patient's needs
When a patient's ideas are different from the health care worker's, the health care worker should accept that the patient has different views, and then make sure the patient knows the health care worker's point of view about TB. Health care workers can make it clear that even if they do not share the patient's views, they respect them. Knowing and respecting the patient's views will improve the working relationship and make the patient more likely to be adherent.
The health care worker should keep in mind that judgments about
the patient's lifestyle, beliefs, and behaviors may be conveyed
through nonverbal body language. This form of communication can
also negatively affect the health care worker's relationship with
the patient. The health care worker should be objective and nonjudgmental.
|Study Questions 9.7-9.12
9.7. Describe a case management system.
9.8. To address the patient's specific needs, what kind of things does the health care worker need to learn about the patient?
9.9. How soon should the health care worker talk with the patient to begin the assessment?
9.10. What is an open-ended question and how can it help the health care worker learn about a patient?
9.11. In the list below there are close-ended and open-ended questions. Mark an X for each open-ended question that the health care worker can ask the patient to find out his or her ideas and feelings about TB.
9.12. Why is it important to assess the patient's knowledge, beliefs, and attitudes regarding TB and adherence to TB medicine?
|Case Study 9.1
Mr. Howard is unemployed and homeless. The homeless shelter Mr. Howard frequents recently sent him to the hospital because he had TB symptoms. He was diagnosed with TB and admitted to the hospital for TB treatment. The hospital's infection control nurse immediately telephoned a TB case report to the health department TB clinic.
Mr. Howard remained in the hospital for 5 days. On the day he was discharged, a nurse instructed Mr. Howard to go to the TB clinic the following morning for an evaluation and a supply of medicine. He failed to keep the appointment.
A health care worker had been assigned to find Mr. Howard when his case was reported. When Mr. Howard missed his appointment, she set out to locate him and persuade him to come to the clinic. She eventually found him in a crowded bar, where she scolded him for his careless behavior and ordered him to return with her to the clinic.
|Case Study 9.2
Michael, 45 years old, is a cook at a local fast food restaurant. He went to see his physician because he was feeling fatigued, was unable to sleep, had lost his appetite, and had been coughing for several weeks. His physician suspected tuberculosis and admitted Michael to the hospital for further tests.
His sputum smears were positive for AFB and he was started on appropriate therapy. The physician called the local health department to report the diagnosis. A case manager was assigned and asked a health care worker to visit Michael in the hospital. The health care worker visited Michael in the hospital the next day.
Educating the Patient
Explaining the Importance of Adherence
Giving patients the health information they need is a challenge for health care workers. As patients first learn of their new TB diagnosis, they may not be ready for detailed information on medications, side effects, and diagnostic procedures. All people go through different stages of absorbing information and changing their behavior based on this information. To be meaningful, health information must be right for each patient's knowledge and awareness of the problem.
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. When people are worried about their risk for TB, they may become interested in learning how to get a skin test. Education is an interactive process that requires the health care worker to take into account the specific needs of each patient.
As part of patient education, health care workers should explain the importance of why people with TB disease need to take their medicine. Health care workers should explain how adhering to TB treatment can be good for the patient and for others. For example, adhering to therapy can help a patient feel better sooner, cure their TB, and help them return to normal activities. Likewise, a patient's adherence to therapy can prevent the further spread of TB to family, friends, coworkers, and the general public, and can prevent the development and spread of multidrug-resistant TB.
Health care workers should explain to the patient that some people have trouble staying on the medication schedule. The health care worker should help patients find ways to identify and deal with potential adherence problems. Patients are more likely to be adherent if they help make the decisions and choose solutions rather than being told what to do. For example, the health care worker can ask the patient to provide feedback on the site and time for DOT. Patients are more likely to pay attention to information that is relevant to their needs and does not require abrupt changes in their behavior. In general, patients may be more likely to follow the treatment plan if they understand their illness and the benefits of treatment.
Before the health care worker begins educating a patient about TB, he or she should find out how much the patient may already know about TB. Refer back to Table 9.1 for suggested open-ended questions that can help determine patient TB knowledge. For example, it is important to know what a patient thinks causes TB before the health care worker discusses the need for treatment with drugs.
Patients may have little or no knowledge about TB and TB treatment or may have misconceptions about TB or TB treatment. For example, some patients may not know that TB can be cured most of the time by adhering to treatment. Likewise, others may be confused about the difference between TB infection and TB disease.
If a patient has some understanding of the disease and its treatment, the health care worker should confirm the accurate information and correct any misconceptions the patient may have. To be certain a patient has an accurate understanding, the health care worker should ask the patient what has just been explained and what is understood. This should be done with concern and care so the patient does not feel threatened. The health care worker may have to spend extra time reviewing important information.
Effective Communication Techniques
In presenting new information, health care workers should use effective communication techniques such as the following:
- Use simple, nonmedical terms
- Use the appropriate language level
- Limit the amount of information
- Discuss the most important topics first and last
- Repeat important information
- Listen to feedback and questions from the patients
- Use concrete examples
- Make the interaction with the patient a positive experience
Use simple, nonmedical terms in explanations, and be specific about the behaviors that are expected. For example, it is much more helpful to say, "This pill will help you get better," than to say, "This drug, isoniazid, is a bactericidal agent that is highly active against Mycobacterium tuberculosis." Using words that are familiar to patients can make the information relevant to them.
Use the appropriate language level. Written information should match the patient's reading level. Persons with a limited education may only be able to understand very basic materials. Highly educated patients may prefer more detailed information. If a patient does not read or write, health care workers should give instructions orally and leave visual cues or reminders, such as a snapshot of each medication, with the time the patient should take it written in large numbers.
Limit the amount of information given at any one time. If too much information is given, the patient may not remember any of it. To avoid overwhelming the patient, the topics to be discussed should be organized in the order of their importance. In the first session, the most essential topics (such as the names of exposed contacts) should be discussed, in case the patient does not return for follow-up care.
Discuss the most important topics first and last. People remember information presented at the beginning and at the end of a session more easily than they do the information presented in the middle. Health care workers should tell the patient what is expected of him or her before they explain test results, the expected outcome of a procedure, or treatment. For example, early in the first session the health care worker might say, "To get well, you must take four of these capsules every day." This information should be reviewed before leaving the patient.
Repeat important information. Some data indicate that people need to hear new information several times before they will remember it. Health care workers should repeat key messages throughout the session, have the patient repeat the information, then in later sessions review previously presented material first. The topic can be introduced by saying, "As we discussed last time,..."
Listen to feedback and questions. Communication with the patient should always be two-way. This means that the health care worker should listen to feedback and questions from the patient to be sure they received and understood the message. The health care worker should use open-ended questions to assess the patient's knowledge and beliefs.
Use concrete examples to make information easy to remember. This is especially important for patients who are not on DOT. For example, visual descriptions of pills can be helpful. The health care worker could say, "Take two Rifamate capsules in the morning when you get out of bed. These are the big red pills in the little brown bottle." If there is something patients do every morning, such as brushing their teeth, a picture or note placed on the mirror near the toothbrush can serve as a reminder.
Make the interaction with the patient a positive experience.
It's not only what is said and done, but how it
is said and done, that will help the patient adhere to treatment.
The health care worker should be encouraging and supportive. The
health care worker's warm, concerned, and respectful attitude toward
the patient will make the experience more pleasant for both and
will render the treatment more effective.
|Study Question 9.13
9.13. List eight effective communication techniques that can help the health care worker present new information to patients.
|Case Study 9.3
Willie, a 40-year-old construction worker, was just diagnosed with TB. The health care worker has completed her initial assessment and learned that Willie is very upset because he thinks he is going to die. He knows very little about TB, except he remembers his grandfather "wasting away" and dying from TB when he was young. He has a 2-year-old son at home who he is afraid will also die from TB. Willie did not complete school beyond the 8th grade. He is worried that he will lose his job once his employer learns he has TB.
The health care worker needs to educate Willie about TB and its treatment.
Importance of Interpretation
The health care worker and the patient can have serious problems understanding each other if they do not speak the same language. If an interpreter is used, the health care worker can still have problems getting accurate, unbiased information and protecting the patient's confidentiality. For example,
- Interpreters may not state accurately what the health care worker and the patient have said
- Interpreters sometimes add their own ideas of what has been said
- The patient might be uncomfortable talking about personal information that he does not want a third person, the interpreter, to know
- Interpreters may have difficulty finding equivalent words or translating medical terms into the patient's language
Selecting interpreters. It is best to use trained medical interpreters whenever possible (Figure 9.1). If a trained interpreter is not available, other persons who are sometimes used as interpreters are other health care workers who speak the patient's language, the patient's family members, or people from the patient's community. If an interpreter is unavailable when the health care worker makes a home visit, the health care worker should call back to the office or clinic to see if someone there could translate for them over the telephone.
Figure 9.1 This is a picture of a healthcare worker interviewing a patient with the assistance of an interpreter.
This is a picture of a health care worker interviewing a patient with the assistance of an interpreter.
There are problems with using family members and some community members as interpreters because they are usually unfamiliar with medical terms. Also, they will hear personal information about the patient, and it is difficult to make sure that the information will be kept confidential. Occasionally, an interpreter who is familiar with the patient might know something about the patient that the patient does not wish to share with the health care worker. This could cause a conflict between the interpreter and the patient. If family members must be used to interpret, children should not be used; they will hear personal information and may be asked to translate things that the family feels children should not discuss, and this can be upsetting.
Using the patient's language. If the health care worker knows a few words of the patient's language, he or she should use them. It will show respect and interest and make the patient feel more comfortable. If the health care worker works in an area with a large number of patients who do not speak English, the health care worker could consider learning their language, or at least some greetings and key words and phrases that are often used in TB prevention.
Guidelines for interpreters. After the health care worker has identified an interpreter, he or she should follow these guidelines to make the best use of the interview:
- Ask for the patient's permission to use an interpreter
- Plan the interview and decide what key points to talk about with the patient
- Meet with the interpreter before the interview to talk about the goals for the interview, to give instructions and guidance, and to make sure the interpreter is comfortable with the questions and topics that will be discussed
- Remind the interpreter that all information in the interview is confidential
- Ask the interpreter to refrain from adding his or her own comments
- Address the patient directly, not the interpreter
- Ask the interpreter to explain questions or answers that are not clear
- Keep the messages simple and factual; use short phrases and focus on one topic at a time
- Give the interpreter time to translate each phrase before continuing; do not interrupt the interpreter
- Ask the interpreter to translate the patient's and the health care worker's own words as exactly as possible
- Give the patient time to answer questions
When a health care worker is serving as an interpreter for another, he or she should follow these guidelines:
- Translate the patient's own wording as much as possible to give the health care worker a better idea of the patient's concept of TB
- Remember that all information the health care worker hears is confidential
- Be respectful of both health care worker and patient
- Try to ensure that the health care worker and patient completely understand each other
- When the health care worker does not understand, try to explain cultural and social issues that are affecting the patient's health
|Study Questions 9.14-9.15
9.14. If the health care worker uses an interpreter, what are four problems the health care worker may encounter?
9.15. List at least six guidelines for working with an interpreter that can help the health care worker make the best of the interview.
|Case Study 9.4
Angelina, a 35-year-old Hispanic migrant farm worker, was referred to the health department by a local community college. The college conducted a health fair for the migrant farm workers at a farm in the area. Angelina's skin test was positive at 25 mm of induration. When asked about her health, she told the health fair staff that she had been coughing for a couple of weeks, felt tired, and had lost some weight.
After much coaxing by the health fair staff, Angelina, who speaks very little English, arrives at the health department for further tests. With her are her two 11-year-old twins. The twins speak English. No one in the TB program at the health department speaks Spanish, but the health care worker remembers that a nurse in the Maternal and Child Health program speaks Spanish.
The nurse in the Maternal and Child Health program agrees to help the health care worker translate. He says he only has 5 minutes to spare. The nurse and the health care worker rush into the room where Angelina and her twins are waiting. The nurse begins to speak to Angelina without any prompting from the health care worker. Angelina looks startled and is reluctant to answer any questions. When Angelina does answer questions, the nurse does not seem to be listening to Angelina completely. He keeps cutting her off.