Adherence and Support
Gaps in Research
- 1.
- Interventions are needed to reduce barriers to treatment adherence and to understand how these differ by sex.
- 2.
- Interventions are needed to increase adherence for adolescents.
- 3.
- Major evidence gaps exist on adherence-enhancing interventions for long-term effectiveness and at higher CD4 counts.
- 4.
- Further operations research is needed on the optimal collaboration between HIV treatment facilities and community-based organizations, including cost-effectiveness data.
- 5.
- Legislation and enforcement of legislation that prohibits employment discrimination against people living with HIV is needed so that accessing HIV care is not seen as jeopardizing one's livelihood.
- 6.
- Additional efforts are needed in implementing viral load monitoring to increase adherence.
- 7.
- Research is needed on what different factors affect adherence among men and women.
- 8.
- Specific additional adherence support is needed for those who initiate ARVs at CD4 counts above 250.
- 9.
- Increased information on an ongoing basis is needed concerning availability of support groups for people living with HIV.
- 10.
- Strategies are needed to address sub-optimal adherence during switch between first- and second-line ART.
- 11.
- Interventions are needed to reduce drug resistance, particularly among those who are treatment naïve. Third line regimens may be needed in some resource limited settings.
- 12.
- Interventions are needed to enhance counseling to successfully prepare patients for lifelong therapy.
- 13.
- Interventions are needed to address the adherence of patients who fast as part of religious practice.
1. Interventions are needed to reduce barriers to treatment adherence and to understand how these differ by sex. Increased research is needed to understand the most effective strategies to increase adherence. Studies found that a number of barriers that impact treatment adherence, such as violence, stigma, transport costs, childcare, forced migration, the need for food, the need to hide their medication from their male partners and changes in body image. Screening and treatment for depression may improve adherence, although some studies have shown mixed results. A review found that adherence differs by sex, but with little disaggregation for which factors affect women. Data collection should be more nuanced and not assume that women fall into static groups. A study of people living with HIV who disengaged from ART found that harsh and disrespectful treatment by providers, as well as competing work and livelihood demands, lack of funds for transport, etc. made attendance at ART clinics challenging.
Gap noted, for example, in a review of evidence globally (Katz et al., 2013; Govindasamy et al., 2012; Mills et al., 2012b; Mills et al., 2012d; Mills et al., 2006; Dilmitis, 2014) and for high-income countries, including Hong Kong, Peru and Brazil (Puskas et al., 2011); a review of evidence for middle- and low-income countries (Nachega et al., 2010c); India (Joshi et al., 2014; Nyamathi et al., 2011; Bachani et al., 2010); Southern Africa (Kagee et al., 2011); Nigeria (Smith and Mbakwem, 2010); Guatemala (Campbell et al., 2010b); South Africa (Fisher et al., 2014; El-Khatib et al., 2010); Brazil (Campos et al., 2010); Uganda (Weiser et al., 2010; Siu et al., 2012); Burundi (Renaud et al., 2011); Tanzania (Layer et al., 2014; Roura et al., 2009); Zambia (Murray et al., 2009; Sasaki et al., 2012); China (Li et al., 2012; Sabin et al., 2008; Williams et al., 2014); Uganda, Tanzania and Botswana (Hardon et al., 2007); globally for PEPFAR-supported countries (IOM, 2013); Malawi (Pinto et al., 2013); Pakistan (Tahir and Uddin, 2014).
2. Interventions are needed to increase adherence for adolescents. Multiple studies from developed and developing countries reported young age as a risk factor for treatment interruption and that adolescents were less adherent to antiretroviral therapy than adults.
Gap noted, for example, in South Africa (Nachega et al., 2009; Kranzer et al., 2010 cited in Kranzer and Ford, 2011); in the United Kingdom (Mocroft et al., 2001 cited in Kranzer and Ford, 2011); French Guiana (Nacher et al., 2006 cited in Kranzer and Ford, 2011); Europe, Argentina, and Israel (Holkmann Olsen et al., 2007 cited in Kranzer and Ford, 2011); Canada (Moore et al., 2009 cited in Kranzer and Ford, 2011).
3. Major evidence gaps exist on adherence-enhancing interventions for long-term effectiveness and at higher CD4 counts. A rapid systematic review by WHO found that while ART requires life-long therapy, the majority of studies have lasted two years or less.
Gap noted globally (Chaiyachati et al., 2014; Thompson et al., 2012); in Asia and Africa (Gabillard et al., 2013).
4. Further operations research is needed on the optimal collaboration between HIV treatment facilities and community-based organizations, including cost-effectiveness data. A review of the global evidence found that more information is needed on which interventions are most effectively provided in communities as compared to HIV treatment facilities, and how a patient's integrated needs can be best met as a continuum of care.
Gap noted globally (Amanyeiwe et al., 2014).
5. Legislation and enforcement of legislation that prohibits employment discrimination against people living with HIV is needed so that accessing HIV care is not seen as jeopardizing one's livelihood. Studies found that those who feared that they would lose their employment if found to be taking ARVs discontinued treatment.
Gap noted, for example, in South Africa (Longinetti et al., 2014); Zambia (Musheke et al., 2012; Sasaki et al., 2012); Uganda (Siu et al., 2012).
6. Additional efforts are needed in implementing viral load monitoring to increase adherence. A study found that viral load failure was identified a median of 10.4 months earlier through viral load testing as compared to CD4 testing. CD4 testing did not identify almost half of the patients in a large cohort experiencing treatment failure.
Gap noted in lower and middle-income countries (Tucker et al., 2014; Nelson et al., 2014); Nigeria (Rawizza et al., 2011).
7. Research is needed on what different factors affect adherence among men and women.
Gap noted based on studies from Africa, Latin America, Western Europe and North America (Ortego et al., 2012).
8. Specific additional adherence support is needed for those who initiate ARVs at CD4 counts above 250. A review of forty randomized trials found that no consensus exists on how to effectively increase adherence, particularly among those living with HIV with no symptoms. A study found that initiating ARVs at CD4 above 250 was associated with increased odds and number of treatment interruptions and increased odds of persistent increased viral load within the first three months of ARV initiation.
Gap noted, for example, in rural Uganda (Adakun et al., 2013); globally (Mills et al., 2012d).
9. Increased information on an ongoing basis is needed concerning availability of support groups for people living with HIV. A study found that people living with HIV were given one time counseling concerning the availability of support groups only when they accessed their HIV-positive serostatus and when they were critically ill, so that collecting ARVs is correlated with information of support groups and other social services.
Gap noted, for example, in South Africa (Madiba and Canti-Sigaqa, 2012).
10. Strategies are needed to address sub-optimal adherence during switch between first- and second-line ART. A study found that many patients switching from first- to second-line ART, particularly in workplace programs, were non-adherent before and after the switch.A study found that many patients switching from first- to second-line ART, particularly in workplace programs, were non-adherent before and after the switch.
Gap noted, for example, in South Africa (Johnston et al., 2012).
11. Interventions are needed to reduce drug resistance, particularly among those who are treatment naïve. Third line regimens may be needed in some resource limited settings. A systematic review was done on studies published on the spread of drug resistance in resource-limited settings after rollout of ART from 2001 to 2011, which reported on changes in the rate of HIV-1 drug resistance in treatment-naïve HIV-positive patients. The review found that east Africa had the highest rate of increase of drug resistance in treatment-naïve patients at 29% per year since rollout, followed by 14% in southern Africa, and 3% in west and central Africa. No specific analysis was done on gender because many studies did not include sex ratios. In total, 162 reports were included with data from 42 countries and 26,102 patients. In another study of Latin America, it was estimated that at least 6% of patients would need third line regimens within 5 years of ART initiation.
Gap noted globally (Gupta et al., 2012); and in Latin America (Cesar et al., 2014).
12. Interventions are needed to enhance counseling to successfully prepare patients for lifelong therapy. Studies have found that patients were not well prepared for life-long therapy; that adherence rates decreased over time and hospital costs increased for those who were less adherent. A study found that patients believed that ART killed other patients, not understanding that initiating ART at high viral loads and low CD4 counts reduces the likelihood of survival.
Gap noted, for example, in Zambia (Musheke et al., 2013a); Senegal (Diouf et al., 2012); Brazil (Rocha et al., 2011); Botswana (Do et al., 2010); South Africa (Nachega et al., 2010a).
13. Interventions are needed to address the adherence of patients who fast as part of religious practice. A study found that fasting observed by HIV-positive patients (e.g., Ramadan) did not have a significant effect on adherence, but patients did change when they took their ARVs (Weaver et al., 2014). Another study reported that fasting was a major reason for patients to be non-adherent and to be lost to follow-up (Bezabhe et al., 2014). Counseling should include discussion of fasting when appropriate, and more studies on the impact of rescheduling drug timing on adherence can better illustrate the relationship between fasting and adherence.
Gap noted, for example, in Indonesia (Weaver et al., 2014); and Ethiopia (Bezabhe et al., 2014).