Adherence in resource-limited settings
Experiences from two PASER counselors
Last month’s UNAIDS report showed that now four million HIV-infected people in low- and middle income countries are receiving the life saving antiretroviral therapy (ART). A 36% increase in one year and a ten-fold increase over five years (WHO, UNAIDS report: Towards Universal Access: scaling up priority HIV/AIDS interventions in the health sector). Although there is still a long way to go to reach access to treatment for every HIV infected person, the four million is an enormous accomplishment. The next challenge is to keep these four million on treatment. Adherence to ART greatly determinates the success of the therapy. Poor adherence results in viral resistance, the progression of the disease and eventually in the patient’s death. Especially in resource-limited settings monitoring adherence is important. Poor access to care and limited availability of alternative regimens in these settings greatly limit the options for patients with virological failure due to poor adherence (Hawkins in AIDS 2007, 21:1041-1042). In other words, there is just one chance to do it right. Still, HIV-patients in Africa often show better discipline than their Western counterparts. For example, in a speech at the Academic Medical Center in Amsterdam on October 7th, Professor of Health and Social Care Anita Hardon, of the University of Amsterdam, stressed that adherence is better in Uganda than in the United States. On the other hand, she recognized the potential danger of high transport costs of medicine, of hunger and of failing distribution systems, which endangers successful adherence in a country like Uganda.
Loss to follow-up
Another concern is that ART programs in Africa have retained only about 60% of their patients at the end of two years (Rosen; PLoS Med. Oct 2007, Vol.4, Issue 10, 298). Although this percentage is an average, it clearly shows that it is difficult to keep patients in the programs over a longer period. Losing almost half of the patients within two years is a great cause for concern and is a higher loss of patients than of similar programs in developed countries. Loss to follow-up is the number one cause for patients dropping out of these programs, followed by death of the patient. Rosen (a.o.) therefore calls for better tracing procedures and better understanding of loss to follow-up to improve the retention of patients in the programs.
PASER-M
Naturally, PASER recognizes the importance of adherence. Although PASER-M is an observational study, keeping the patients on ART for at least the duration of the program is vital for the well-being of the patients and maximizes the data to reliably monitor the development of viral resistance patterns. PASER-M has developed certain methods to stimulate adherence to ART. One is the study itself and secondly a three monthly adherence appointment. In the PASER-M study each patient has to come in for a baseline visit and a 12 and 24 months followup visit. During these visits a blood sample is taken from the patient to measure the viral load and, if the viral load is detectable, evaluate the level of resistance. These tests may be a reflection of whether the patient shows signs of poor adherence. An annual check is not frequent enough to address adherence or detect treatment failure at an early stage. The counselors in the clinics of six PASER countries make a clinical appointment every three months for all 3000 patients in the cohort. During this interim visit, the patient has to answer questions on, for example, how often has he or she missed medication during the last month and how often were pills collected at the pharmacy. These
three monthly appointments help the counselors to identify poor adherence quicker and furthermore, these visits help to keep track of the patients in the cohort to minimize the percentage of loss to follow-up in the study.
Millicent Olulu: During counseling different issues come up as people share their various challenges. And as much as I avoid to, there are cases that I find myself sympathizing with and which make me experience internal conflicts. As clients present the issue of adherence, I am able to explore with them holistically all aspects of their life. This enables us to identify why she/he is struggling with adherence. The result is normally a wide range and combination of life projects, disclosure status and other social economic factors. Intense sharing leads me to an empathic response, probation and a solution focus approach towards the specific problem. When therapy is obtained and the client has moved from self to others, facts to feelings and past to present we conclude with finding solutions to be addressed and worked on. After the sessions, I assess my thought process to identify what I have carried from the session and ensure I deal with a level of sympathy or internal processes that I experienced during the session.
|
Christine Matama: Counselors’ involvement in the HIV/AIDS care and management is a commendable one that includes: research (i.e. PharmAccess African Studies to Evaluate Resistance Monitoring (PASER-M)), HIV/AIDS counseling and care; adherence counseling, post pharmacy counseling, on going counseling and psycho-social support. A midst the care and support, we keep ourselves a breast of the patient challenges in their life long medication. Patients suffer by unfavourable conditions like stigma and discrimination hindering them from accessing treatment, emerging resistant viral strains which leaves them wondering and worrying of death. For example one of our patients exclaimed, after being switched to second line: ‘What is the next step, death?’ But also social-economic constraints, for example long distances to clinics for diagnosis, dig deep in HIV/AIDS patients’ lives. Side effects associated with HAART, PMTCT and sexual reproductive needs, discordance which some couples perceive as a sign of infidelity causing divorce and separation amongst couples. And last sexual orientation/deviation of men having sex with men (MSM). Factors that can potentially form huge challenges in a patient’s life. As counselors, dealing with these different issues, we are faced with a challenge of having no standardized training and practice. Counseling is not yet established in most work places. Often there is not enough facilitation, which retards some of our activities like telephone counseling, home visits and outreaches.
|
Two stories
In practice stimulating adherence is not a clear cut process with standardized procedures. The stories, by two counselors (see the boxes above) show that they have to deal with emotions, stigma, and practical problems, like the distance to the clinic, which hamper adherence counseling. The stories are written by the counselors Christine Matama, from Joint Clinical Research Centre in Fort Portal and Millicent Olulu from the International Centre for Reproductive Health (ICRH) in
Mombasa. They both stress that building a confident relationship with the patient is very important, which enables them to discuss all issues openly with the patient. Building this relationship requires close and frequent contact with the patient, of which the three monthly PASER visit is one.