Our study involved a rapid appraisal of adherence problems confronting ARV users and front-line health workers in resource-poor health facilities in three sub-Saharan countries. The findings suggest that patients are experiencing problems in their efforts to attain optimal adherence rates. Although the adherence rates seem high when measured as an average percentage of doses taken at the correct time, the Botswana study suggests that around one out of three users do not achieve the optimal adherence rate of at least 95% needed to minimize the risk of treatment failure and the development of drug-resistance. While adherence support and ART provision is well-established in Botswana - one of the first countries in sub-Saharan Africa to scale-up access to ART - levels of optimal adherence are likely to be lower elsewhere.
All the facilities studied in Botswana, Tanzania and Uganda provide ARVs free of charge, but other related costs (e.g. transport expenditures, registration and user fees at the private health facilities, and lost wages due to frequent clinic visits and long waiting times) are obstacles to optimal adherence. It is significant that these same financial concerns were expressed in all three country studies and at all the sites involved. Hunger in the initial treatment phase (when the patient is recovering) is an added concern for poor patients not covered by food support in the three countries. ARV treatment programmes need to find ways to confront these constraints. Clearly it is not enough to provide treatment free of charge.
Treatment programmes also urgently need to find ways to reduce waiting times for ARV patients coming for refills and take into consideration the work schedules of ARV users. Evening and early morning clinics may be a good option, though these would be an additional burden for health workers. Patients could also be given appointments to reduce waiting times. In addition, workplace policies should include provisions for patients to take time off work to attend to their treatment needs.
The studies showed that health workers have heavy workloads and are working in health facilities with sub-optimal health infrastructures. While the Botswana programme seems to have overcome some of these infrastructure problems, in Uganda and Tanzania the lack of CD4 machines to monitor treatment outcomes on-site and the reported stock-outs of ARVs in Tanzania are major challenges to the ART programmes. A regular and reliable supply of the needed drugs is a pre-requisite for optimal adherence.
A dynamic approach to adherence support is needed (Spire et al., 2002). As reported by Carrieri et al. in 2003, optimal adherence appears to be most critically important in the initial treatment phase, in terms of achieving undetectable viral loads. In the initiation stage, many patients also suffer side-effects, some of which disappear over time. Treatment programmes need to emphasize adherence support in this stage. Health care workers should properly inform patients about the adverse effects they can expect, and how to confront these. The treatment programmes should consider providing or subsidizing both transport and food support to patients who are too poor to pay.
Once the health status of ARV users has improved, and optimal adherence levels are being achieved, these must be maintained. To this end, recurrent costs for ARV users can be reduced by providing patients with three-month refills, rather than the one-month refills that are current practice in the facilities studied. It is ironic that the system of one-monthly refills, intended to help monitor adherence, in practice creates a constraint to adherence because of the transport costs incurred. Transport costs can also be reduced by setting up a more extensive network of facilities where ARV users can go for refills, adherence monitoring and counselling. In addition, treatment programmes need to set up transfer mechanisms for ARV users to allow them to attend newly established facilities closer to home.
Pharmacists and nurses can play an important role in this follow-up care. Their involvement can also reduce the workload of doctors. To provide good quality care, all auxiliary health workers should be trained to recognize clinical signs of treatment failure, such as emergent opportunistic infections, and to provide adequate adherence support. When treatment failure occurs, intensified adherence monitoring by means of electronic monitoring devices or self-report could be used more systematically to investigate whether sub-optimal adherence is causing the treatment failure. This would help prevent unnecessary recourse to second-line ARVs.
Adequate counselling services are needed at health facilities or in communities in both the initiation and continuation phases of ART to help patients cope with the side-effects of ART, identify and confront the social constraints to adherence, and address the financial problems that ARV users face. The country reports highlighted the lack of designated rooms for counselling in some facilities and, in one glaring example, a room being used by three counsellors and ARV users at the same time. These kind of conditions are likely to inhibit patients from discussing personal issues. Adequate space and privacy is needed to ensure the confidentiality and trust needed for effective adherence counselling.
In Botswana, all the facilities appraised had well-trained counsellors. The Tanzanian and Ugandan teams found that the quality of the counselling varied greatly. In the public facility studied in Uganda, nurses were given the task without adequate training. Yet training programmes for ARV counselling exist in sub-Saharan Africa and could be used more fully. Ministries of health and the agencies funding and providing technical support for ART programmes need to acknowledge that the provision of ARVs will not lead to positive treatment outcomes unless accompanied by the necessary adherence support in all health facilities. The Ugandan ARV users were very positive about the treatment support provided by TASO's community-based volunteers, many of whom are HIV-positive and can therefore better relate to the problems of people living with HIV (PLWHIV). Health facilities need to strengthen their ties with PLWHIV groups and other community organizations in order to strengthen community support mechanisms for ARV users.
More specifically, adherence support programmes need to find ways to help ARV users remember to take their pills on time, for example through alarms on mobile phones, or through using popular radio programmes as a prompt. Our studies suggest that, in all three countries, children play a role in reminding their parents to take their pills. Adherence support could recognize the potential role of children in adherence support, and provide them with adequate information on ART, for example through school education programmes, to empower them in their role as treatment supporters.
Stigma was found to be a key constraining factor in all three countries. Most treatment programmes try to reduce stigma by encouraging disclosure to at least one person, who then becomes a treatment supporter. Our findings show that ARV users value such treatment support, but still find it hard to take their drugs when they are among people to whom they have not disclosed their HIV status, such as co-workers, or friends. ARV users are likely to have to take their medicines in social contexts where they have not disclosed their HIV status, especially if their work shifts vary or if they lead irregular social lives. Public and workplace education on ART is needed in high prevalence areas to help reduce the stigma attached to AIDS.
The researchers involved in our studies are now working with staff from the health facilities to help improve adherence support mechanisms along the lines of these recommendations. However, many of our recommendations cannot be implemented without external support (for transport, food and better counselling and monitoring facilities).