Challenges for long-term HIV treatment adherence and risk behaviour reduction in sub-Saharan Africa: Lessons learned at the Infectious Diseases Institute, Kampala, Uganda

Thesis Summary

There has been remarkable global scale-up of antiretroviral treatment (ART) since 2004, particularly in sub-Saharan Africa. There are currently more than 11 million people living with HIV infection (PLHIV) receiving ART in sub-Saharan Africa. This has been achieved because of increased funding and adoption of simplified less expensive treatment regimens. However, it has been increasingly recognized that also in resource-limited settings, adherence to ART is a substantial challenge. At the same time, there continues to be significant rates of ongoing HIV transmission due to continuing sexual risk behaviour among some PLHIV.

The overall objective of this thesis was to assess some of the challenges of long-term adherence to ART and risk behaviour reduction in sub-Saharan Africa.  We had three specific objectives: 

The first objective was to assess the effect of belief in divine healing on adherence and characteristics of PLHIV taking ART who also consult traditional healers. We analysed data from the research cohort at the Infectious Diseases Institute (IDI) clinic in Kampala, Uganda. We analysed data after 30weeks of follow up. At that time 13.8% of the 558 research cohort participants had died. Of those who were still alive, 6(1.2%) participants had discontinued ART because they believed they had been healed of HIV through prayer. At the time of discontinuation of ART, 5 of the 6 participants had not achieved viral suppression. They were all evangelicals, 1 died and 1 participant was lost to follow up before being recalled to the clinic. When recalled back to the clinic, all the 4 participants declined to restart ART initially but after intensive adherence counselling they restarted. Two had tuberculosis relapse and one was admitted with suspected tuberculosis. Eventually 3 of the 4 participants were switched to second line ART due to viral failure. These findings highlight the need to assess patients’ spiritual beliefs as part of preparation to initiate ART and continually during ongoing adherence counselling sessions. Also, because most people are religious in resource-limited settings, there is need for the faith sector to take an active role in HIV prevention, care and treatment.

We analysed also data from a study on adherence conducted in Zambia, Tanzania and Uganda. Patients with fewer HIV symptoms (OR=1.27; 95% CI: 1.01-1.59), those who had been on ART for >5.3 years (OR=1.93; 95% CI: 1.50-2.46) and those from Tanzania (OR=9.03; 95% CI: 2.22-36.85) were more likely to have ever consulted a traditional healer for HIV in the last three months. We concluded that because patients accessing traditional healers are at risk of both stopping ART and poor adherence they require extra counselling about the dangers of non-adherence and other negative effects of lures from such healers. There is also need for a more engaging collaboration between traditional healers and biomedical health care workers given that provider shopping is common in resource-limited settings.

The second objective was to assess the effect of an educational board game on patients’ uptake of knowledge about HIV and Sexually Transmitted Infections (STIs). A randomized controlled trial conducted among PLHIV attending the IDI clinic showed that an educational board game called “Make a Positive Start” resulted in significantly higher knowledge uptake about HIV, ART and Sexually Transmitted Infections (STIs) than the standard of care (health education talks). We enrolled 180 participants, 90 for each study arm. The pre-test scores were similar for both arms and there was significant increase in uptake of knowledge in both study arms in the post-test. However, in the post-test participants in the board game arm had a higher knowledge score (4.7points, 95% Confidence interval: 3.9-5.4) than the controls (1.5 points, 95% confidence interval: 0.9-2.1). The difference in knowledge uptake between study arms was 3.2 points (p<0.001). Both participants and facilitators preferred learning using the board game to the health education talk. We recommend further evaluation of the impact of this new educational board game on behaviour change in the short and long term.

The third objective was to describe changes in sexual behaviour among HIV-infected Ugandan adults over two years following initiation of second-line ART. A sexual behaviour sub-study was performed within the Europe-Africa Research Network for Evaluation of Second-line Therapy (EARNEST) trial. Of the 79 participants enrolled, 62% were female, median age (IQR) was 37(32–42) years, median CD4-count (IQR) was 79 (50–153) cells/μL and median viral load log was 4.9 copies/ml (IQR: 4.5-5.3) at enrolment. The majority were in long-term stable relationships; 69.6% had a main sexual partner, and 87.3% of these had been sexually active in the preceding six months. Around 13.9% reported other sexual partners, this was higher among men than women (30% vs 4.1 %, p <0.001). In 50% there was inconsistent condom use with their main sexual partner and a similar proportion with other sexual partners, both at baseline and follow-up. Around 40% of the participants had not disclosed their HIV status to their main sexual partner (>70% with other sexual partners) at enrolment which was similar in men and women. There was no significant change in these sexual behaviours over the 96 weeks following switch to second-line ART. Risky sexual behaviours were prevalent (other sexual partners, inconsistent condom use, non-disclosure of HIV status and exchange of money for sex), which poses a risk of potential onward transmission of drug-resistant virus. These findings have practical implications for approaches to counselling patients identified as failing first line ART.

In conclusion, the studies included in this thesis highlight some of the challenges PLHIV face with adherence to both ART and safe sexual practices. Religious beliefs, lures from traditional healers who claim to cure HIV, low health literacy and sexual risk behaviour have been reported. These findings highlight the key role counsellors have to play in promoting treatment adherence and risk behaviour reduction. However, to achieve the most out of the counselling practice, there is need to perform the  counselling based on scientific evidence. Research in counselling interventions will lead to the development of guidelines that will lead to better health outcomes of PLHIV.