The most common challenge in TB care is when a patient discontinues taking medicines or misses treatment appointments. For this reason, it is extremely important to have a plan to quickly follow up with the patient. If possible, this plan should involve a member of the TB treatment centre team (community nurse, doctor, TB treatment supporter) who will visit the patient at home the same day, if the patient has given you permission to visit their home. If they have not given you permission, another plan should be in place to contact the patient (e.g. by mobile telephone or through a trusted friend of the patient who the patient has given you permission to contact.
The following steps should be taken (11):
- Make a home visit to engage with the patient, if they have given you permission to visit their home.
- Assess the reasons for discontinuing the treatment.
- Discuss the concerns that caused the patient’s non-adherence.
- Educate the patient about the need to continue treatment.
- Counsel and support the patient. 6. Involve family members/caregivers to ensure treatment.
- Involve family members/caregivers to ensure treatment.
1. Home visit to engage with the patient
The member of the TB treatment centre – such as community nurse, doctor or supervisor – should visit the home (if given permission) of the patient together with, or in addition to, the TB treatment supporter. During the home visit it may be possible to identify more clinical problems than during the monthly clinic evaluation. The patient should be treated in a friendly and sympathetic way by showing that he/she is respected and valued. The guidelines discussed in Section 5.2 on effective communication skills should be followed.
2. Assess the reasons for discontinuing treatment
- Every effort should be made to listen carefully to the patient’s reasons for missing treatment.
- The health-care provider should make a list of problems that contributed to the patient being unable to follow treatment.
- The health-care provider should explore the patient’s understanding of the illness.
- The health-care provider should be sympathetic and should recognize the difficulties faced by the patient.
- The health-care provider should not just speak at the patient but should have a discussion with him/her
3. Discuss the patient’s concerns that caused non-adherence
The health-care provider needs to discuss some of the common reasons why patients are unable to follow up with treatment or take their medications. For instance:
a. Manage side-effects
The most common reason for stopping treatment is difficulty in tolerating medicines. This is particularly important when people are on second-line medicines for the treatment of DR-TB. It is extremely important to enquire about possible side-effects and to refer to the guide on managing these (46).
b. Explore the person’s health beliefs
People can hold a number of beliefs and ideas – for instance, on what has caused their illness or how can it be treated, which are quite different from those held by the health professionals. If patients believe that there is no cure for TB, or that when symptoms get better it is not necessary to continue treatment, or that cure might be offered by alternative or traditional medicine, they may not continue their treatment
Some examples of questions that can help explore a patient’s health beliefs are:
- What do you think has caused your illness?
- How does your illness affect your body?
- How severe do you think it is?
- What kind of treatment do you think might help?
- What are the major problems caused by your illness?
- What are you afraid of most about your illness?
In such cases, the TB treatment supporter, along with a nurse, doctor or community supervisor, should explore ways to correct the misunderstandings and discuss with the patient how to restart treatment.
c. Address economic problems
Many people are unable to work when they are ill and may be the primary wage earners for their family. Housing, food and clothing needs should be assessed to find out what types of material support can help (see Section 3.2 for more details).
d. Address substance use or other mental health conditions
Alcohol and drug use are known to affect treatment adherence. People should be encouraged to reduce or stop consumption if it interferes with their treatment. If this is difficult or other mental health conditions are suspected, consultation with a mental health or other relevant specialist should be considered.
e. Problems with the health-care service
People may have problems with health-care providers who might arrive late, might not listen carefully, or might make the patient feel not respected or not valued. These issues are also known to affect adherence and must be addressed. The health-care provider should recognize any service problems, apologize and offer a solution.
f. Address social problems
If there are other social problems, the patient should be referred for appropriate support. This would also include homeless people, or patients who might be shunned by their family or who have to re-locate for immigration, work or economic reasons, in which cases they should be linked to services in the new location.
4. Educate the patient about need to continue treatment
The health-care provider should:
- Assess if there are gaps in the patient’s understanding of the disease and its treatment.
- Correct any misunderstandings or misinformation.
- Encourage the patient to ask additional questions.
- Summarize the diagnosis, treatment and recommended steps in simple terms.
- Ask the patient to repeat or describe the treatment terms.
5. Counsel and support the patient to resume treatment promptly
Once the reasons for discontinuing medication have been discussed, have been dealt with to the best of the health-care provider’s ability and the patient has been educated about the need to continue treatment, the health-care provider should reassure the patient and provide realistic encouragement. Follow-up plans should be confirmed with the patient.
Further guidelines for psychological support are discussed in Section 5.5.
6. Engage community health workers, family members and caregivers to ensure treatment adherence
Engagement of community health workers has been demonstrated to be effective in securing favourable treatment outcomes. Family can also be an important source of support for the patient. If it is not possible for a family member to care for the patient, another caregiver should be identified and should also be educated about the need to continue treatment so that they can make sure the patient takes the treatment correctly at home. Information about measures to prevent the spread of infection, and that a person is usually no longer infectious within two weeks of the start of treatment, is also extremely important
Community opinion and religious leaders can be helpful if there are community-wide issues – such as stigma towards patients dealing with TB. This option is possible only if the patient allows the healthcare providers to share information about his or her TB diagnosis.