Ciencia social y humanismo

Patients with DR-TB are more likely to have had problems with non-adherence in the past. Adherence to DR-TB therapy is particularly difficult because of its prolonged treatment regimens with larger numbers of drugs that have more serious adverse effects. Thus, DR-TB patients are at increased risk of non-adherence to treatment. Adherence is an essential element in preventing the generation of extremely-drug resistant strains capable of spreading within the community that leave virtually no possibility of cure for the patient.

Thus adequate support measures should be taken. The measures to ensure DOT and adherence to treatment include: patient education, DOT, socioeconomic support, emotional support, management of side effects and close monitoring to improve adherence.

12.2.1 Patient education

Patients and their families should receive education about DR-TB, its treatment, potential drug side effects and the need for adherence to therapy. This should commence at the start of therapy and continue throughout the course of treatment. Education can be provided by clinicians, nurses, lay treatment supporters and other health-care providers. Materials should be appropriate to the literacy levels of the population and should be culturally sensitive as well.

12.2.2 Directly observed therapy (DOT)

Because DR-TB treatment is the last therapeutic option for many patients and because there is a serious public health consequence if therapy fails in a patient with DR-TB; it mandatory that all patients on treatment for DR-TB be on directly observed therapy (DOT). DOT can be provided either in the community, at health centre, or hospital setting. DOT should be provided to a patient in manner that it solves long transportation times and distances, long waiting times. Difficulty in accessing services may all reduce the efficacy of DOT.

Who can deliver DOT? The first choice for and the initiators of DOT are health- care workers after which treatment supporters in the community take up the role. Community-based support in DOT can be very effective especially if provided by former patients acting as treatment supporters for daily DOT.Former patients are a living proof that adherence to daily DOT pays and there is hope for cure if they persevere in their treatment.

a family member. Family relationships are often complicated for the DR-TB patient, and a family treatment supporter could be subject to subtle manipulation by the patient, relatives, employers, etc.

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maintain strict confidentiality regarding the patient’s disease.

12.3.3 Socioeconomic interventions

Socioeconomic problems including hunger, and risk of loosing employment should be addressed to enable patients and their families to adhere to treatment. These problems can be successfully tackled through the provision of “enablers and “incentives”. Enablers are goods or services that make it easier for patients to adhere to treatment, such as the provision of transport refunds. Incentives are goods or services that are used to encourage patients to adhere to therapy, such as the provision of food packages. Professional social workers should be used to assess the need for such socioeconomic interventions and monitor their delivery. Depending on resource envelop, socioeconomic interventions may include:

ƒ Free health care;

ƒ Food parcels to DR-TB patients and their dependents where possible; ƒ Temporary shelter in a housing facility for DR-TB patients;

ƒ Transportation fees;

ƒ Advice and assistance in administrative matters relating to the treatment;

ƒ Assistance in defending rights and/or reinforcing the responsibilities of patients; ƒ Advise to employers to ensure DR-TB patients retain their jobs

ƒ School fees for dependent children;

ƒ Providing skills training and livelihood to patients both while on treatment as well as to prepare them

with skills that can support them as they reintegrate to

the community upon treatment completion.

12.2.4 Psychosocial and emotional support

Having DR-TB can be an emotionally devastating experience for patients and their families. Considerable stigma is attached to the disease and this may interfere with adherence to therapy. In addition, the long nature of DR-TB treatment combined with the side effects of the drugs may contribute to depression, anxiety and further difficulty with treatment adherence. Providing emotional support to patients may increase the likelihood of adherence to therapy. This support may be organized in the form of support groups or one-to-one counseling by trained providers. Adherence may be enhanced by using informal support from a multidisciplinary “support to adherence” team (social worker, nurse, health educator, companion and doctor).

12.2.5 Early and effective management of drug side effects

Although rarely life-threatening, the side effects of second-line drugs can be debilitating. Patients who experience high rates of side effects may be at increased risk of interrupting treatment. Early and effective management of side effects is therefore one of the strategies for promoting adherence to DR-TB treatment. Refer to chapter 11 for details

of management of side effects.

12.2.6 Monitoring and the follow-up of the non-adherent patient

A strong system of monitoring that allows the patient to be followed throughout treatment must be in place. The forms in Chapter 18 are designed to assist the care provider in follow-up. When a patient fails to attend a DOT appointment, prompt patient follow- up by a DOT worker visiting the patient’s home should be done the same day to find out why the patient has missed an appointment and to ensure that treatment is resumed promptly and effectively. The situation should be addressed in a sympathetic, friendly and non-judgmental manner. Every effort should be made to listen to reasons for the patient missing a dose(s) and to work with patient and family to ensure continuation of treatment. Transportation problems if any should be addressed.