Treatment programmes take differing routes to determine which patients will start treatment, as Alex Coutinho noted, with some concentrating on quantity rather than quality in order to reach national and regional targets. Some also regard extensive adherence preparation as too demanding on sick patients, and see the priority to be getting them onto treatment.
On the other hand, adherence-focused programmes tend to take their lead from the pioneering model developed over the past five years by MSF in Khayelitsha, South Africa, and many other treatment sites around the world.
It’s a model that places the patient at the centre, and which eschews the frankly punitive attitudes of public health TB programmes, which assume that the patient will be irresponsible, in favour of an approach that assumes that, armed with sufficient knowledge and support, the patient is the one who is responsible for the long-term success of her treatment.
The model comprises thorough patient education on the benefits and side effects of ARV treatment prior to treatment initiation, and continuous support with participation in support groups, self-nomination of a treatment supporter and the availability of adherence counsellors for one-to-one sessions. Adherence to tablets is verified by regular pill counts on return dates at clinics. Pill boxes and printed material are provided as adherence aids.
ICAP stresses that “adherence is more than taking medications” but also must include (and generally begins with) “adherence to care:” Does the patient make all of her or his scheduled appointments, participate in education and counselling, and attend support groups? Are they receptive to the idea of home visits or other outreach? Have they come in and completed ordered tests, modified his or her lifestyle and made a commitment to keep from transmitting HIV to others?
In many clinics patients are judged to be ready for treatment only when they have been through a preparation process, and their cases are reviewed by a selection group. In Vietnam for example, the selection group at Family Health International-managed treatment projects consists of clinic and home-based care team staff, as well an elected representative of local people with HIV.
Family Health International, which is running PEPFAR-funded treatment programmes in several countries, reported lessons from its early programmes in Ghana, Kenya and Rwanda in a detailed report in 2005 (Ritzenthaler).
All programmes mandated at least one, and preferably three sessions of treatment adherence counselling, conducted by nurses who had typically received two to three days of training on adherence. In Rwanda patients also received ART-related written material in the local language, including a card with a picture of each drug and the schedule for pill-taking.
Several of the FHI programmes mandated disclosure to a relative or friend who would act as a treatment supporter (see below). In Kenya counsellors said that while their training prepared them well for supporting disclosure, they were concerned about the growing numbers of patients, noting that counselling is time-consuming, should not be rushed and may be extensive when disclosure issues are involved. They agreed that more counsellors would be needed as the numbers on treatment expand.
Counsellors in the Kenyan programme highlighted the need for clear, precise information on side-effects and how to manage them. Quite apart from the need to educate about the risks associated with some drug side-effects, problems with drug side-effects are frequently cited as a reason for interrupting or stopping treatment, so educating about side-effects should be a core part of any patient’s preparation for treatment.
FHI developed visual materials for use by counsellors to explain opportunistic infections, antiretroviral therapy and potential side effects. The Healthy Living counselling guide can be downloaded from http://www.fhi.org/en/HIVAIDS/country/Kenya/res_healthy.htm
FHI also developed an extensive adherence support worker training manual with over fifteen modules. The training manual can be downloaded from http://www.fhi.org/en/HIVAIDS/pub/res_ASW_CD.htm
The FHI materials were derived from a training programme developed in Zambia, which has now trained over 200 community volunteers. The programme is described in detail at http://www.fhi.org/en/HIVAIDS/country/Zambia/res_ASWstory.htm
NAM has developed detailed training materials for health care workers and counsellors on each of the drug combinations commonly prescribed in resource-limited settings, with a description of the key drug side-effects and how to manage them. They can be downloaded from http://www.aidsmap.com/en/docs/6B8B0557-7767-4AB5-95FF-4DA8D882DF1D.asp
Africaid developed a nurse training programme which covers the background to antiretroviral therapy and the role of nurses in adherence support and patient monitoring. It can be downloaded from http://www.aidsmap.com/en/docs/3F5509B5-BC9C-4C63-9AFD-EDA4EEA3B52E.asp
Western Cape ART rollout patient materials