Self-Study Modules on Tuberculosis
Module 9: Patient Adherence to Tuberculosis Treatment
Answers To Case Studies
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.
- What should the health care worker have done differently?
The health care worker should have visited Mr. Howard to begin the assessment as soon as possible (before Mr. Howard left the hospital). If he had left the hospital before she got there, she should have located him and spoken to him privately. By approaching Mr. Howard in a public place, she has failed to maintain confidentiality. After approaching him in this way, the health care worker will have a difficult time establishing a trusting relationship with Mr. Howard. It is important he feel comfortable sharing his thoughts.
- How can the health care worker get to know Mr. Howard
better in order to assess potential adherence problems?
The health care worker will need to learn as much as possible about Mr. Howard in order to assess potential adherence problems. The health care worker will need to learn the following about Mr. Howard:
- 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
Also, assessing TB patients' knowledge, beliefs, and attitudes regarding TB and adherence to TB medicine 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 the strength of family and social support; potential job-related problems; and, to some extent, the problem-solving skills of the patient.
Throughout treatment, the health care worker should ask the patient about his or her concerns about TB and success with adherence to the regimen. 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.
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.
- How would you assess Michael's knowledge, beliefs,
and feelings about TB disease and treatment?
One way to learn about the differences between Michael's beliefs and the medical understanding of TB 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 like "What," "Why," "Who," When," and "How" that demand an explanation. In addition, phrases that begin with "Tell me about" or "Explain to me" may be helpful in eliciting information. Such questions are very useful in assessing a patient's ability and willingness to adhere to treatment.
For example, the health care worker could ask Michael
- 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?
- Why is it important to assess Michael's knowledge, beliefs, and feelings about TB disease and treatment?
- Why is it important to assess Michael's knowledge, beliefs,
and feelings about TB disease and treatment?
It is important to assess Michael's knowledge, beliefs, and feelings about TB disease and its treatment because the more the health care worker is aware of the Michael's ideas and concerns, the better prepared the health care worker will be to anticipate and resolve problems that can arise. An assessment will help the health care worker better understand Michael's views and will help determine areas in which he needs education. If Michael's ideas are different from the health care worker's, he or she should accept that he has different views, and then make sure that he knows the health care worker's point of view about TB. The health care worker can make it clear that even if he or she does not share Michael's views, the health care worker should respect them. Knowing and respecting Michael's views will improve the working relationship and make Michael more likely to be adherent.
An assessment may also give the health care worker some idea of Michael's ability to adhere to a treatment regimen. For example, asking Michael what problems the illness has caused him can help the health care worker assess the strength of his family and social support; potential job-related problems; and, to some extent, Michael's problem-solving skills.
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.
- What should the health care worker do to effectively
communicate with Willie?
Since Willie has little knowledge about TB the health care worker should begin by confirming the accurate information and correct any misconceptions he may have. To be certain that Willie has an accurate understanding, the health care worker should ask Willie what has just been explained and what is understood. Since Willie is very upset, the health care worker may have to spend extra time reexplaining important information. The health care worker should tell Willie that TB is curable if he adheres to prescribed therapy. The health care worker should also assure Willie that his son and other family members and close contacts will be evaluated for TB infection and disease and will be given appropriate therapy if needed.
When presenting this information to Willie the health care worker should remember to use the following techniques:
- Use simple, nonmedical terms in explanations, and be specific about the behaviors that are expected. Try using words that are familiar to Willie.
- Use the appropriate language level. Since Willie's education doesn't go beyond the 8th grade, written information should be at a lower reading level. Willie may only be able to understand very basic materials.
- Limit the amount of information given at any one time. Willie was just diagnosed with TB and is very upset and afraid. Giving him too much information at this time may be too overwhelming and he may not remember any of it. To avoid overwhelming Willie, the topics to be discussed should be organized in the order of their importance.
- Discuss the most important topics first and last. Remember, Willie is very upset. You may want to present important information at the beginning and at the end of the session. Willie will have an easier time remembering information that is presented first and last. The health care worker should tell Willie what is expected of him before explaining test results, the expected outcome of a procedure, or treatment.
- Repeat important information. Again, since Willie is very upset, you may want to repeat key messages throughout the session, have Willie repeat the information, then in later sessions review previously presented material first.
- Listen to feedback and questions. Communication with Willie should always be two-way. This means that the health care worker should listen to feedback and questions from Willie to be sure he received and understood the message.
- Use concrete examples to make information easy to remember. This is very important. You may also want to use visuals to help get your messages across to Willie.
- Make the interaction with the patient a positive experience. The first interview is key to establishing a trusting relationship with Willie. It's not only what is said and done, but how it is said or done, that will help Willie adhere to treatment. Since Willie is very upset and has concerns about his child's health, the health care worker should be encouraging and supportive. The health care worker's warm, concerned, and respectful attitude toward Willie will make the experience more pleasant for both and will render the treatment more effective.
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.
- Who would you ask to interpret?
The health care worker should ask the nurse to translate. Angelina's twins are young and they may hear personal information about their mother that may be inappropriate and it may be difficult to make sure that the information will be kept confidential. In addition, her twins are probably unfamiliar with medical terms.
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. Without any introduction or prompting by the health care worker, the nurse begins to speak to Angelina. Angelina looks startled and is reluctant to answer any questions. When Angelina does answer questions, the nurse doesn't seem to be listening to Angelina completely. He keeps cutting her off.
- What should the health care worker have done differently?
After the health care worker identified the nurse as an interpreter, she should have
- Asked for Angelina's permission to use an interpreter
- Planned the interview and decided what key points to talk about with Angelina
- Met with the nurse before the interview to talk about the goals for the interview
Since the nurse did not have adequate time to serve as an interpreter, the health care worker should have looked for another interpreter.
- What are some instructions the health care worker
could have given to the nurse before the interview?
Before the interview, the health care worker should have set aside some time to speak to the nurse. The health care worker should have given the following instructions to the nurse:
- Remind him that all information in the interview is confidential
- Ask the nurse to refrain from adding his own comments
- Ask the nurse to explain questions or answers that are not clear
- Give him time to translate each phrase before continuing
- Ask the nurse to translate the patient's and the health care worker's own words as exactly as possible
9.5 You are assigned to deliver DOT to Mrs. Wilson, a 76-year-old woman who lives alone in the house she and her husband bought many years ago. Mrs. Wilson was recently released from the hospital. Upon discharge from the hospital, she received education about TB and about the need to take medications until she completes treatment. She was told that she would be started on DOT and a health care worker would visit her at her home to help her take her medication. Mrs. Wilson is elated to have some company. She happily offers you cookies and wants to "talk awhile" before she takes her medication.
- What are the tasks you complete when you deliver
DOT to Mrs. Wilson?
Check for side effects. At each visit, before the drugs are given, the health care worker should ask Mrs. Wilson if she is having any problems with the medications. Mrs. Wilson should be educated about symptoms indicating adverse reactions to the drugs she is taking, whether minor or serious. If Mrs. Wilson has symptoms of serious adverse reactions, a new drug supply should not be given; Mrs. Wilson should stop taking medication immediately. The supervisor should be told that the drugs were not given, and the prescribing clinician should be notified about the adverse reaction. The health care worker should arrange for Mrs. Wilson to see the clinician as soon as possible.
Verify the medication. Each time DOT is delivered, the health care worker should verify that the right drugs are delivered to Mrs. Wilson, and that she has the correct amount of medication. If this cannot be confirmed, the drugs should not be given. The supervisor should be asked for clarification.
Watch Mrs. Wilson take the pills. Medication should not be left for Mrs. Wilson to take on her own. The health care worker or Mrs. Wilson should get a glass of water or other beverage before she is given the pills. The health care worker should watch Mrs. Wilson continuously from the time each pill is given to the time she swallows it.
Document the visit. The health care worker should document each visit with Mrs. Wilson and indicate whether or not the medication was given. If not given, the reason and follow-up plans should be included. It is important to correct any interruption in treatment as soon as possible.
9.6 Nick is a 27-year-old single unemployed male. He has been in and out of rehabilitation clinics for crack use. He picks up odd jobs in the warehouses and diners on the waterfront. He lives in a single room occupancy hotel.
Four weeks ago he was brought by the police to the emergency room of General Hospital for treatment of stab wounds to the right arm resulting from a drug deal gone bad. Upon admission he was intoxicated, appeared poorly nourished and underweight, and had a productive cough. His smears were positive for AFB and he was started on appropriate therapy. He remained in the hospital for 5 days. Against medical advice, Nick then insisted on leaving the hospital. On the day of discharge, the infection control nurse telephoned a report to the health department, and instructed Nick to go to the health department the next morning for evaluation and a supply of medicine. He failed to keep his appointment. The next week a health care worker was assigned to locate Nick and persuade him to come to the clinic. The health care worker found him lying on a park bench near the hotel where he lives. The health care worker convinced Nick to go to the clinic for follow-up tests. At the clinic, Nick reluctantly agrees to take his medication, although he does not want DOT. He says he is not a "baby" and can take the medication on his own.
- How would the health care worker help Nick adhere
to his treatment regimen?
When the health care worker begins to work with Nick, it is important that he asks Nick what he believes about TB disease and treatment. Nick doesn't seem to understand the importance of finishing treatment. Therefore, adherence may be very difficult.
Next, the health care worker should educate Nick about TB and its treatment. As part of patient education, Nick should be told that some people have trouble staying on the medication schedule. The health care worker should help Nick find ways to identify and deal with potential adherence problems. Nick is more likely to be adherent if he helps make the decisions and chooses the solutions rather than being told what to do. In addition, Nick is more likely to pay attention to information that is relevant to him and does not require abrupt changes in his behavior. In general, Nick may be more likely to follow the treatment plan if he understands his illness and the benefits of treatment. After the health care worker assesses Nick and establishes a relationship with him, incentives and/or enablers could be offered to help Nick adhere to treatment.
- What can the health care worker say about DOT to
convince Nick of its importance?
It is important to explain the benefits of DOT to Nick and to stress the fact that DOT is not punitive. The health care worker could explain that DOT is more than watching Nick swallow each pill. DOT will
- Help him keep appointments
- Provide education when needed
- Offer incentives and enablers to encourage adherence
It is also important to point out that DOT will help the health care worker monitor Nick for any side effects and help him complete an adequate regimen.
9.7 Mrs. Chan has active pulmonary TB and is very reluctant to participate in the DOT program. She is afraid she will die from her disease, and is very anxious. Because of difficulties she had when she immigrated 5 years ago, Mrs. Chan doesn't trust health department staff or any other government employee.
A health care worker is assigned Mrs. Chan's case while she is hospitalized. During a visit to the hospital, the health care worker explains to Mrs. Chan that she is being offered DOT so that she will never forget to take her medicine. If she follows all the health care worker's instructions, Mrs. Chan will receive a supply of dietary supplements at each meeting and $100 at the end of treatment. Mrs. Chan smiles and nods.
The health care worker is very surprised when Mrs. Chan doesn't show up for her first DOT appointment.
- What can happen if a health care worker offers Mrs.
Chan incentives before gaining the patient's trust?
Incentives and enablers should be chosen according to the patients' special needs and interests, or the patients may not care if they receive them. For example, if this health care worker had known that transportation is a problem for Mrs. Chan, he could have offered bus tokens, bus fare, or taxi fare. If transportation was not her problem, then something else that she needs or would appreciate could have been offered. The health care worker didn't take the time to learn as much as he could about Mrs. Chan to identify her needs and interests and better motivate her to complete treatment. More importantly, he offered Mrs. Chan incentives before he had established a good relationship with the patient. Because Mrs. Chan doesn't trust the health care worker, she may see the incentives as a bribe and may feel insulted by his offer.
- How might the health care worker have done a better
assessment interview with Mrs. Chan?
The health care worker could have begun by using open-ended questions to ask Mrs. Chan her concerns about TB. The more he can become aware of her ideas and concerns about TB and its treatment, the better prepared he would be to anticipate and resolve problems that can arise. Mrs. Chan might be able to trust the health care worker and feel more comfortable sharing her thoughts if he would
- Listen carefully to the patient and pay attention to hesitations, inconsistencies, or strong emotions
- Speak openly, honestly, and politely about differences in ideas. Correct Mrs. Chan's misconceptions tactfully and allow time for questions if she doesn't understand fully
- Show Mrs. Chan proof of what he is saying, such as chest x-rays or laboratory reports, whenever possible
- Involve Mrs. Chan in the development of the treatment plan and be flexible in meeting her needs
9.8 Ms. Johnson is a 68-year-old widow with active TB disease. She has several other health problems, including obesity, osteoarthritis, and poorly controlled diabetes. She needs a cane to help her walk and often becomes anxious when she leaves her apartment. She lives in a low-income housing block 3 miles from the TB clinic. Ms. Johnson's two children live outside the state and visit infrequently.
- Conduct a behavioral diagnosis of Ms. Johnson's
potential barriers to completing her TB treatment and the methods
that can be used to overcome the barriers.
Ms. Johnson has several barriers to adherence that may prevent her from successfully completing a TB regimen which include
- Complex medication regimen
- Complex health problems
- Physical limitations
- Lack of support from family
- Low income, possible lack of money to pay for health care
Her other health problems, with the addition of the TB drugs, will make pill-taking very complex. Consideration should be given to simplifying her TB regimen as much as possible and to using DOT. Ms. Johnson has a problem getting around easily, so DOT delivered in her home would enable her to take her medication consistently.
Ms. Johnson lacks support because her family is not nearby. DOT will provide her with some social support and can help her to resolve problems that may arise. Because Ms. Johnson's income is low, it may help to facilitate third-party payment for her health services or a referral to a social worker who can make sure she gets any benefits to which she is entitled. If there is a home health nursing program in the area for which Ms. Johnson qualifies, consideration may be given to assigning her DOT care to a nurse who is able to manage all of Ms. Johnson's health care problems in a coordinated manner.
9.9. Mr. Sivaraman is a recent immigrant from India who is working two jobs to support his wife and three children. He has been on DOT for 2 months and his TB symptoms have greatly improved. Mr. Sivaraman has kept daily DOT appointments with the health care worker, but recently has missed two appointments and skipped his last clinic visit.
- Why might Mr. Sivaraman be nonadherent?
Mr. Sivaraman may be having difficulties keeping appointments with his busy work schedule. In addition, since his symptoms have improved, he may be less motivated to continue treatment. Sometimes the health care worker can find out what problems a patient is having by contacting no-shows, either with a telephone call on the same day or with a home visit.
- What steps can the health care worker take to help
Mr. Sivaraman keep his appointments and adhere to therapy?
The health care worker should call Mr. Sivaraman right away to schedule a new clinic appointment and reconfirm the DOT schedule. The health care worker should use this discussion to counsel the patient and to identify and solve problems that interfere with appointment keeping. If Mr. Sivaraman continues to break appointments, the health care worker may want to hold a conference with all members of the health care team (physician, nurses, other health care workers, and other staff) so that the problem can be discussed and resolved with help from the entire staff. Mr. Sivaraman could also be included in this conference so he will be able to help make adjustments to the treatment plan.
For some patients, a formal adherence agreement -- a written understanding between the health care worker and a patient -- may be useful. A patient should dictate or write down the activities he or she agrees to carry out (such as taking medicine as prescribed), in return for specific services, activities, or incentives from the health care worker. For some patients, this written commitment increases the likelihood of adherence. The patient should be asked to sign the agreement next to the health care worker's signature and be given a copy to keep. The health care worker should review the agreement with his or her patient periodically to assess how well both are doing and to make changes as needed. If Mr. Sivaraman becomes chronically nonadherent, the health care worker may need to try several different strategies to help him, and possibly even consider legal alternatives.
9.10. Walter, a 50-year-old single, unemployed male, was diagnosed with smear and culture positive, pulmonary tuberculosis one month before he was released from prison. The prison doctor telephoned the health department to report the case and asked them to take over managing Walter's TB treatment upon his release. The case manager assigned a health care worker to work with Walter. The health care worker met with Walter while he was still in prison and set up a plan to continue DOT upon Walter's release. For the first 2 weeks after his release, Walter adhered to treatment. He then began missing appointments at the arranged DOT site and at the clinic, stating he felt "okay." For the next few weeks Walter's visits to the clinic became rare. On Walter's latest clinic visit, his sputum smear was positive for AFB. The health care worker assessed Walter's problems and tried everything he could think of to get Walter to adhere to his treatment -- gave DOT at Walter's house or his favorite hang out, offered incentives, changed health care workers, and threatened legal action. When the health care worker mentioned legal action, Walter got very upset and threatened the health care worker. He stated that he felt "okay" and he was tired of the health care worker "harassing" him in front of his friends. The health care worker documented all of his efforts to get Walter to adhere to treatment.
- What should the health care worker do next?
Since addressing the identified problems using methods such as DOT, incentives, and enablers did not work, the next step is to try DOT that is ordered by a public health official or a court. Court-ordered DOT may be successful in convincing Walter that his TB treatment is an important public health priority. Since Walter has recently been released from prison, court-ordered DOT may convince him to continue his treatment and come to the clinic for follow-up.
The health care worker should not begin procedures for confining Walter to a treatment facility until after Walter has shown that he is unable or unwilling to follow a treatment regimen implemented outside such a facility. Involuntary confinement or isolation for inpatient treatment should be viewed as the last step. When legal steps are taken, the health care worker must make sure that Walter's rights are protected and he should have legal counsel.