|Clinical Guide > HIV Treatment > Adherence|
Guide for HIV/AIDS Clinical Care, HRSA HIV/AIDS Bureau
For HIV-infected patients with wild-type virus who are taking antiretroviral therapy (ART), adherence to ART is the major factor in ensuring the virologic success of an initial regimen and is a significant determinant of survival. Adherence is second only to the CD4 cell count as a predictor of progression to AIDS and death. Adherence rates approaching 100% are needed for optimal viral suppression, yet the average ART adherence in the United States is approximately 70%. Individualized assessment of and support for adherence are essential for patients to be successful with ART.
Patients with suboptimal adherence are at risk not only of HIV progression, but also of the development of drug resistance (see chapter Resistance Testing) and consequent narrowing of options for future treatment. In one cohort study, it was estimated that drug-resistant mutations will occur in 25% of patients who report very high but not perfect (92-100%) adherence to ART. It is important to note, though, that the relationship between suboptimal adherence and resistance to antiretroviral (ARV) medications is very complex and is not thoroughly understood.
Characteristics of the ARV regimen and individual patient pharmacokinetic variables also influence the likelihood of both virologic suppression and the development of resistance mutations. For example, in patients with wild-type virus on initial ART regimens, it appears that more drug resistance occurs in regimens that are based on an unboosted protease inhibitor or a nonnucleoside reverse transcriptase inhibitor, where the genetic barrier to resistance is relatively low, than in regimens that include a ritonavir-boosted protease inhibitor. In patients with suboptimal adherence, these factors can influence outcomes of therapy more strongly.
Studies indicate that health care providers' assessments of their patients' adherence often are inaccurate, so a calm and open approach to this topic is very important.
Adherence assessment is most successful when conducted in a positive, nonjudgmental atmosphere. Patients need to know that their provider understands the difficulties associated with taking an ARV regimen. Within a trusting relationship, a provider may learn what is actually happening with the patient's adherence rather than what the patient thinks the provider wants to hear. See Table 1 for examples of questions to assess adherence in patients who are on ART. For patients who are considering initiation of ART, it is important to lay the groundwork for optimal adherence in advance, and to anticipate barriers to adherence; see Table 2 for exploratory questions.
Common reasons for nonadherence include the following: experiencing adverse drug effects, finding the regimen too complex, having difficulty with the dosing schedule (not fitting into the daily routine), forgetting to take the medications, being too busy with other things, oversleeping and missing a dose, being away from home, not understanding the importance of adherence, and being embarrassed to take medications in front of family, friends, or coworkers. Other contributors to incomplete adherence include psychosocial issues (e.g., lack of social support, homelessness), psychiatric illness, and active substance abuse. It is important to look for these and other potential barriers to adherence. (See chapter Initial History.)
Evaluate the following:
Assess adherence at each visit using questions such as those in Tables 1 and 2, and assessment scales such as those found in Tables 4, 5, and 6 (Appendix). Ask these questions in a simple, nonjudgmental, structured format and listen carefully to the patient to invite honesty about issues that may affect adherence. Asking about adherence over the last 3 to 7 days gives an accurate reflection of longer-term adherence.
Ideally, a multidisciplinary team that includes primary providers as well as nurses, pharmacists, medication managers, and social workers works together to evaluate and support patient adherence.
Table 1. Important Questions to Ask Patients Taking ART
Table 2. Important Questions to Ask Patients Considering Initiation of ART
The patient's self-report has been shown to be the most effective measure of adherence. Although, according to some studies, self-report of good adherence has limited value as a predictor of good adherence; self-report of suboptimal adherence should be taken seriously and considered a strong indicator of nonadherence.
Before initiating (or changing) ART, it is important to assess the patient's readiness for ART. Patient factors that have been associated with poor adherence in the United States and western Europe include:
Most of these factors are modifiable. Before starting ART, appropriate interventions should be made, and sources of adherence support should be identified to help patients overcome potential barriers to adherence.
It is important to note that sociodemographic variables such as sex, HIV risk factors, and education level generally are not associated with adherence. In addition, a history of substance or alcohol abuse is not a barrier to adherence.
Assess the patient's support system, and ask who knows about his or her HIV status. Supportive family members or friends can help remind patients to take their medications and assist with management of adverse effects. For patients who have accepted their HIV infection as an important priority in their lives, taking medications can become routine despite other potential adherence barriers such as alcohol or drug use.
Assess patients' willingness to accept and tolerate common adverse effects of ART. Patients may identify some adverse effects that they wish to avoid completely and others that they are willing to accept and manage; this may help in tailoring the selection of ARV medications to the individual patient. Describe strategies for the management of adverse effects before starting a regimen (see chapters Patient Education and Adverse Reactions to HIV Medications), and emphasize that adverse effects often can be treated quite effectively, and that they should notify their providers if they experience them.
For patients taking ART, it is important to assess adherence at every clinic visit. Tools such as those in the Appendix to this chapter may be useful in predicting adherence. Adverse effects are a common cause of suboptimal adherence to ART. Continue to ask whether the patient has adverse effects from the ARV medications and assess his or her ability to accept and tolerate these. Work closely with the patient to treat adverse effects, and consider changes in ART if adverse effects are not tolerated. Continue to offer support to improve or maintain optimal adherence.
Before prescribing ARVs, some clinicians have their patients conduct adherence trials using placebo tablets or jelly beans to measure the patients' readiness to start therapy and their ability to adhere to a regimen. Such a trial allows patients to experience what a regimen will entail in real life, how therapy will affect their daily lifestyles, and what changes will be needed to accommodate the regimen. The shortcoming of placebo trials is that patients are not challenged with adverse effects as they might be with an actual regimen.
Start the ARV regimen only when the patient is ready. Starting it too early may result in poor adherence, failure of the regimen, and increased risk of ARV resistance. Comorbid conditions that interfere with adherence, such as mental health issues or depression, must be treated initially. It is important to consider the patient's preferences and to involve her or him in selecting the drug regimen. The regimen must fit into the patient's daily routine, and the patient must believe in the potential success of ART. Simplifying the ARV regimen to the extent possible with once-daily regimens and the lowest number of pills (and lowest total expense to the patient), while maintaining efficacy and minimizing adverse effects, is important for maximizing adherence and avoiding pill fatigue. Starting ART is rarely an emergency situation, so taking time to identify the patient's wishes for care, making a thorough readiness assessment, selecting the ARV regimen, and planning for adherence support are important measures for maximizing the likelihood of treatment success. (See Table 3 for additional suggestions.)
Table 3. Strategies for Improving Adherence to ART
Patients who can identify their medications (in their own words) and describe the proper dosing and administration have higher adherence rates. Providing patient education before writing a prescription helps ensure adherence to ARV regimens. Education can be provided in oral, written, or graphic form to assist the patient's understanding of the medications and their dosing. Basic information, including number of pills, dosages, frequency of administration, dietary restrictions, possible adverse effects, tips for managing adverse effects, and duration of therapy, will help patients to understand their ARV regimens. Patients should understand that the success of ART depends upon taking the medications every day and that adherence levels of >95% may be important in preventing virologic failure.
Close follow-up by telephone, clinic visits, or other contact with the patient during the first few days of therapy is useful in identifying adverse effects, assessing the patient's understanding of the regimen, and addressing any concerns before they become significant adherence barriers. Individualized interventions should be designed to optimize outcomes for each patient. Pharmacists, peer counselors, support groups, adherence counselors, behavioral intervention counselors, and community-based case managers are useful in supporting adherence for the HIV-infected patient. Multidisciplinary teams that include nurses, case managers, nutritionists, and pharmacists, in which each care provider focuses on adherence at each contact with the patient, are extremely effective, and peer support groups, in which patients share with one another their strategies for improving adherence, may be beneficial.
Many physical devices can be used to support adherence. The following are simple, inexpensive, and easy to incorporate into the routine of the HIV patient:
Interventions for successful adherence are an ongoing effort, not one-time events. Studies have suggested that adherence rates decline when patient-focused interventions are discontinued. Therefore, positive reinforcement at each clinic visit or contact is extremely important. Reinforce what the patient has done well and assist the patient in identifying and problem-solving areas for improvement. Whenever possible, share positive information about the patient's health, such as improvements in quality of life, CD4 cell count, and viral load, to encourage a high level of adherence.
Patients with mental health issues may have difficulty with adherence. In this population, it is particularly important to incorporate ARV medications into structured daily routines. Medication cassettes, reminder signs, and calendars have been very effective for these patients. Nursing care providers and family members may be instrumental in filling medication boxes or ordering prescription refills.
Adherence can be a challenge for young children who rely on parents and caregivers to provide their medications, but adolescents are more likely than younger children to have poor adherence. To improve adherence in this population, it is important to support the family. The U.S. Department of Health and Human Services Guidelines for the Use of Antiretroviral Agents in Pediatric HIV Infection address some of the adherence issues and considerations for this patient population.
Health literacy is an important predictor of treatment adherence, particularly in low-income populations. Adherence interventions are necessary in this population to accommodate individuals who have difficulty reading and understanding medical instructions. Providers often fail to recognize this disability. In addition, adherence support is needed for patients who have difficulty navigating the health care system.
Research has shown that the level of adherence in resource-limited countries is at least as good as in resource-rich settings and that rates of virologic suppression are equivalent or better. Lack of access to a consistent supply of ARV medications, including financial barriers that may cause interruptions in treatment, appears to be the primary obstacle to adherence in resource-limited settings.
Table 4. Visual Analog Scale Used in a Research Study to Assess Adherence to HIV Medication Regimens
Table 5. Morisky Scale to Assess Adherence to HIV Medications: Dichotomous Response Options
Table 6. Morisky Scale to Assess Adherence to HIV Medications: 5-Point Response Options
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