Adherence, especially to lifelong treatment, requires ongoing assessment and monitoring. This should be part of each clinic visit, as factors that influence adherence are dynamic and require different approaches to address them as they change over time. This is particularly apparent for adolescents who are undergoing rapid physical, psychological and emotional changes that can affect their risk-taking and health-seeking behaviours, self-image, need for autonomy, independence, privacy and, as a consequence, their decision-making skills.
Comprehensive adherence assessment should be undertaken when initiating or switching ART medications, and when non-adherence is identified. Comprehensive assessment reveals current and potential influencing factors, facilitates identification of appropriate adherence support strategies, and minimizes the likelihood of non-adherence. Starting ART is a major adjustment for an adolescent and requires commitment. It is therefore essential to ensure that they are ready and fully understand the importance of ART and the implications of starting and maintaining lifelong treatment. This adjustment process can often take time; health providers need to give adolescents the time they need to consider this important step in managing their HIV infection, while supporting them to initiate treatment only when they are ready.
Adolescents may overestimate their adherence to ART and this can be challenging to assess with accuracy. Therefore a combination of methods to assess adherence is recommended.
Self reporting is rapid, inexpensive, easily carried out in clinical settings and is frequently used in routine care. It involves asking questions regarding missed doses to establish adherence. For example:
- What treatment are you currently taking? What time do you take it?
- How many doses have you taken in the last week? month?
- How many doses have you missed in the last week? month?
- When was the last time you missed a dose?
It is essential that these questions be posed in as non-threatening and sensitive way as possible. Adolescents should be encouraged to speak openly, and they should be reassured that many people find it difficult to take all their medications. Adolescents should not be chastized or judged if they are having problems with adherence
Adolescents may find it difficult to remember missed doses exactly. An adherence diary, calendar, phone apps and pill boxes can be useful in keeping track of doses and recording adherence. Overstating adherence is a potential disadvantage of self-reporting, as some adolescents may want to avoid criticism and disappointment, particularly with health providers with whom they have had a long-standing relationship. Creating a conducive environment and maintaining a patient–health provider relationship that encourages honesty and openness is a critical component of accurate adherence assessment.
Simply establishing the number of doses missed or identifying non-adherence is not sufficient to solve adherence issues. Addressing non-adherence requires an understanding of what influences adherence. It involves the health provider exploring – together with the adolescent and in a sensitive and supportive way – the barriers to adherence and potential strategies to address those barriers. Without thoroughly understanding the reasons for non-adherence, it is difficult to support an adolescent to achieve adherence. Barriers can be explored through the use of open-ended questions such as:
- Think about the time you took your medication(s). Tell me about it. What helped you to take it/them?
- Think about the time you missed your tablets. Tell me about it. What was different about that time from the times when you remembered to take them?
- What do you think you could do to prevent this from happening again?
- How do you think we can assist you to prevent this from happening?
Viral load monitoring is the preferred method of assessing adherence and establishing or confirming treatment failure. Where this is not available, CD4 count monitoring and clinical assessment should be used. When initiating ART treatment viral load should be measured at six months and then at least every year thereafter.
For more information on monitoring response to ART and the diagnosis of treatment failure, please refer to the Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection.
A potential disadvantage to viral load monitoring, particularly at 12-month intervals, is that it does not provide real-time assessment of adherence and is often too late to prevent treatment failure. As adherence is often worse during adolescence, more frequent viral load monitoring may assist in avoiding non-adherence and treatment failure during this challenging period. Although viral load monitoring is ideal, in many settings it may not be routinely available. Clinical monitoring (of weight gain or weight loss) may be helpful to identify adolescents who need special support and priority referral for viral load monitoring at other facilities.
Pill counting is used to compare the actual to the expected consumption of ART since last dispensed by the pharmacy. The effectiveness of pill counting is limited by the fact that adolescents may discard tablets not taken prior to their routine clinic visit leading to over-estimated adherence. Additionally, the time required by health providers to conduct pill counts may not be available, especially in resource-limited settings.
Adherence can also be assessed by viewing pharmacy refill records. Such records document if and when an adolescent has collected their ARVs; irregular collection may indicate adherence challenges. Additionally, computerized pharmacy records assist health managers and planners to assess the overall adherence of an adolescent cohort. As with other adherence assessment methods, pharmacy refill records may over-estimate adherence, as collecting ARVs does not guarantee that they are being taken, or taken correctly.
Directly-observed therapy (DOT) requires a designated person to watch the adolescent ingesting their ARVs. DOT conducted by health providers in the clinic setting is resource intensive for both the health services and the adolescent. DOT can also be carried out by a caregiver or another authority figure. However, caution is advised when using this assessment method: DOT can create tension in relationships with adolescents who are often averse to supervision or surveillance by adults, but who may need to depend on those relationships for other forms of support.
For more information on ART regimens, please refer to WHO Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection.