9.2 Guidance on operations and service delivery: adherence to ART
Consolidated ARV guidelines, June 2013
9.2.1 Barriers to adherence
WHO defines treatment adherence as “the extent to which a person’s behaviour – taking medications, following a diet and/or executing lifestyle changes – corresponds with agreed recommendations from a health care provider” (1). For ART, a high level of sustained adherence is necessary to (1) suppress viral replication and improve immunological and clinical outcomes; (2) decrease the risk of developing ARV drug resistance; and (3) reduce the risk of transmitting HIV.
Multiple factors related to health care delivery systems, the medication and the person taking ARV drugs may affect adherence to ART. The individual factors may include forgetting doses; being away from home; changes in daily routines; depression or other illness; a lack of interest or desire to take the medicines; and substance or alcohol use. Medication-related factors may include adverse events; the complexity of dosing regimens; the pill burden; and dietary restrictions. Health system factors may include requiring people with HIV to visit health services frequently to receive care and obtain refills; travelling long distances to reach health services; and bearing the direct and indirect costs of care.
Lack of clear information or instruction on medication, limited knowledge on the course of HIV infection and treatment and adverse effects can all be barriers to adherence to ART. Moreover, uninterrupted ARV drug supply and continuity of care are essential for people to adhere to their medication. Lack of continuity of care is a strong predictor of non-adherence in the longer term. Adherence to ART may also be challenging in the absence of supportive environments for people living with HIV and due to HIV-related stigma and discrimination (2,3).
Pregnant and postpartum women
The pregnancy and postpartum period presents significant biological, social and economic challenges that may affect treatment adherence. Pregnancy-related conditions such as nausea and vomiting may negatively affect treatment adherence. Other challenges during this period may include dealing with the diagnosis of HIV infection (many women learn about their HIV infection during routine screening during pregnancy); concerns about how ART affects the health of the fetus; pill burden; the number of clinic visits during pregnancy; fear of disclosure of HIV status to partners; long waiting times at clinics; and lack of follow-up and transfer to other clinics after delivery (4,5).
Adherence challenges faced by adolescents include a potentially large pill burden if they are treatment-experienced; stigma and fear of disclosure; concerns about safety of medications; adverse effects; peer pressure and perceived need to conform; not remembering to take medications; and inconsistent daily routine.
The transition from paediatric to adolescent care presents several challenges that may affect treatment adherence in adolescents. These include assuming increased responsibility for their own care (which may lead to treatment interruptions because of forgetfulness); an inability to navigate the health care system; lack of links between adult and paediatric services; lack of health insurance; and inadequately skilled health care providers (6,7). Depression and substance use have also been shown to present challenges in adolescents.
Infants and children
Adherence among children is a special challenge. The limited choice of paediatric formulations, poor palatability of liquid formulations, high pill or liquid volume burden, large pill size, frequent dosing requirements, dietary restrictions, loss of primary caregiver, difficulties in swallowing tablets and adverse effects may all affect adherence (3,8,9). Successfully treating a child requires the commitment and involvement of a responsible caregiver. Parents and other family members of children living with HIV may themselves be living with HIV; suboptimal HIV care and treatment for family members could result in suboptimal care for the child.
Mental health disorders
Adherence to ART is known to be complicated by mental health comorbidity that results in forgetfulness, poor organization and poor comprehension of treatment plans. Studies have linked uncontrolled depressive symptoms with low levels of adherence to ART and poor treatment outcomes. As a result, several treatment strategies target depression and psychosocial stress to improve adherence to ART, ranging from co-counselling for HIV and depression to appropriate medical therapies for individuals with mental disorders (10–13).
Substance use disorders
Individuals with substance use disorders may have poor adherence to ART. Alcohol and other drug use could be associated with forgetfulness, poor organization and diversion of monetary and time priorities (10,14–16).
Most-at-risk populations (including sex workers, men who have sex with men, transgender people and people who inject drugs)
In several settings, most-at-risk populations face multiple challenges to accessing health services. Service delivery approaches to improve longitudinal care and maintain adherence for most-at-risk populations remains a critical gap in many settings. Experience indicates encouraging results with peer-based interventions that include strong social support such as outreach teams, peer educators and health workers providing multidisciplinary, non-judgemental and respectful care.
Incarceration may negatively affect continuity of care, diminish trust and predispose individuals to poor financial and social support both during and after incarceration. Substance use disorders may also be an additional challenge for this population. People who are incarcerated have the additional risk of acquiring TB, resulting in high morbidity and mortality rates in the absence of efficacious HIV and TB treatment (17). However, excellent outcomes can be achieved with adequate support and structured treatment programmes within the prison setting.