Adherence to Antiretroviral Therapy Among HIV-Infected Patients With Mental Health Disorders
Updated September 2006 — Currently Under Revision
Patients with mental health disorders should be considered candidates for HAART if they meet the medical eligibility criteria for HAART and demonstrate readiness to begin therapy. Clinicians should determine treatment readiness on a case-by-case basis, weighing such factors as whether the patient attends the majority of his/her appointments and whether he/she expresses an interest in receiving ARV therapy.
Patients with mental health disorders should be considered candidates for HAART if they meet the medical eligibility criteria for HAART and demonstrate readiness to begin therapy. Whether a patient is ready to begin therapy needs to be determined on a case-by-case basis; however, factors such as whether the patient attends the majority of his/her appointments and expresses interest in receiving ARV treatment will help to determine whether the patient is ready.
Achievement of the benefits of HAART requires careful adherence to regimens that may be complex and/or cause unpleasant side effects. Non-adherence to ARV therapy may result not only in reduced treatment efficacy but also in the selection of drug-resistant HIV strains and increased progression to AIDS and death.1,2 Because the exact level of adherence that is necessary to prevent the emergence of drug-resistant virus or to delay disease progression to AIDS and death is unknown, near-perfect adherence (>90% to 95%) remains the goal for all HIV-infected patients,3,4 including those with mental health disorders or a history of mental health disorders.
Appropriate identification and treatment, or referral for treatment, of underlying mental health disorders will facilitate optimal adherence among this patient population. Depression, the most studied mental health disorder, has been shown to be predictive of poor adherence.5,6 However, an improvement of depressive symptoms should result in improved adherence.7
The most effective means of promoting adherence in patients with mental health disorders is through adequate stabilization of their mental health symptoms and integration of mental health treatment into the comprehensive treatment plan.
II. COORDINATION OF CARE
Primary care clinicians should refer patients to licensed mental health providers when:
- Initial mental health treatment by the primary care clinician is ineffective
- Complex mental status evaluations become necessary or a patient’s behavior jeopardizes effective treatment
- The patient has co-occurring mental health and substance use disorders
Primary care clinicians and mental health care providers should collaborate to develop a step-by-step treatment plan. The treatment plan should delineate the frequency of follow-up visits with both providers as well as the frequency of team meetings to reevaluate effectiveness of the overall medical and mental health treatment.
Primary care clinicians should initially consult with a psychiatrist when managing patients with mental health disorders who refuse mental health care. Throughout the patient’s care, the clinician should communicate with a psychiatrist or a licensed mental health professional who can provide consultation.
Primary care clinicians should notify the mental health care provider when there is a change in medical or mental health treatment.
The care for HIV-infected patients with mental health disorders should be a collaborative effort involving patients, primary care clinicians, and mental health providers. Extra attention and involvement of the care team may be required to ensure that these patients adhere to their ARV regimens. When patients are also taking psychotropic medications, adherence may be more difficult, which can make coordination of care even more critical. When necessary, case managers, substance use counselors, relatives, pharmacies, insurance companies, and domestic violence service providers should also be involved.
Regular communication between primary care clinicians and the mental health provider(s) offers a chance to discuss techniques for approaching patients with mental health disorders. For patients who have established a therapeutic alliance with their mental health provider, a meeting involving the patient, the primary care clinician, and the mental health provider can help “transfer” the trust from the mental health provider to the primary care clinician. The same strategy can be used to transfer the trust from the primary care clinician to the mental health provider. This can help the patient feel that the care team takes a genuine interest in the his/her health.
When patients with mental health disorders do not agree to mental health evaluation and treatment by a mental health professional, the primary clinician should establish a “silent partnership” with a licensed mental health professional who can help the primary clinician develop a treatment strategy for the patient. Because psychiatrists are physicians and are familiar with medical illnesses and their treatment, initial consultation with a psychiatrist would be ideal for the primary care clinician to establish the patient’s overall care. A licensed mental health professional may play the primary role as silent partner thereafter. Importantly, however, initiation of or changes in psychotropic
medications should be performed in consultation with a psychiatrist when necessary.
A mental health patient who is enrolled in a methadone treatment program should be educated about drug-drug interactions because he/she may develop opiate withdrawal symptoms after initiating ARV treatment or other medications. The patient should also be asked to notify the medical staff at the drug treatment program that he/she is initiating ARV treatment. If symptoms occur, adjustment of methadone dose may need to be made with ongoing coordination between the primary care clinician and the patient’s methadone program.
III. PREDICTORS OF AND BARRIERS TO ADHERENCE
Predictors of adherence that have been consistently identified among persons with HIV infection with and without mental health disorders include the following:
- Social stability and support
- Beliefs and knowledge about medications
- Confidence in their ability to adhere successfully to an ARV regimen
- A regimen that works (“fits”) with their daily activities8-10
- A strong and trusting patient-provider relationship
Patients with mental health disorders may have learned skills related to adherence to psychiatric medications that they can use to help them adhere to HIV treatment.
Adherence to medication regimens, including ARV treatment, has been shown to be affected by mental health and psychosocial factors. Mental health factors that may affect adherence include:
- Substance use disorders
- Affective disorders, such as bipolar disorder and depression
- Anxiety disorders, such as generalized anxiety disorder, panic disorder, post-traumatic stress disorder (PTSD)
- Fluctuations in mental health status or impairments in cognitive function, which may interfere with a patient’s ability to follow directions
- Personality characteristics, such as pessimism, apathy, and poor coping styles
Although mental health disorders and/or history of substance use disorders are not contraindications for initiation of treatment, these factors may make adherence more challenging. Active substance or alcohol use is one of the few relatively consistent predictors of poor adherence.11,12 Patients with severe affective disorders have also been found to have lower rates of adherence. However, it is noteworthy that, at least in one large study, patients with schizophrenia were found to be as adherent to ARV therapy as those without a serious mental health disorder.13
Psychosocial factors that may affect adherence include:
- Lack of social support
- Family instability
- Domestic violence
- Poor self-image and fears of stigma
Among homeless individuals, adherence may be compromised when they experience increased housing instability or stay in settings not conducive to adherence, such as moving from a residential hotel to a shelter, not having a secure place to keep medications, or not having a refrigerator for certain medications.14
IV. IDENTIFYING AND ADDRESSING POTENTIAL BARRIERS TO ADHERENCE BEFORE INITIATING HAART
Clinicians should carefully assess each patient to evaluate his/her ability to adhere to HAART.
Clinicians should identify and address potential barriers to adherence before initiating HAART. If clinicians elect to defer HAART while addressing potentially modifiable barriers to adherence, they should discuss this decision with the patient and document it in the medical record.
Clinicians should discuss the following with patients before initiating HAART:
- Clinician and patient treatment goals
- Patient’s concerns about treatment and ability to adhere
- Potential side effects of ARV therapy and potential interactions with psychotropic and other medications, as well as how the side effects and interactions will be managed should they occur
Clinicians should use translator or sign language services when language barriers exist.
Primary care clinicians should refer patients with mental health disorders to specialized adherence services when adherence barriers cannot be resolved, particularly if the patient has AIDS or is at risk for advanced progression of HIV.
Determination of a patient’s ability to adhere and promotion of adherence are processes that begin before patients actually start taking medications. Identification and management of potential barriers to adherence before initiating HAART in HIV-infected patients with mental health disorders are critical (see Table 1). Clinicians may choose to defer HAART while addressing potentially modifiable barriers to adherence. In patients with advanced AIDS, it may be appropriate to initiate HAART, even if barriers to adherence are present. In these cases, referrals to specialized adherence programs should be made for intensified adherence support (see Appendix VII: New York State Adherence Services).
An initial step in the identification and management of barriers to adherence involves a discussion with the patient about his/her treatment goals. Discussions about treatment goals involve the patient in the decision of when to initiate therapy. The clinician should not assume that the patient’s goals are the same as the clinician’s goals. For example, the clinician’s main goal may be viral load suppression, whereas the patient’s main goal may be to look healthier. Discussion points may include the following:
- If the clinician and patient have different goals, how can they bridge the difference?
- How realistic are the patient’s goals?
- Which symptoms might impede him/her in achieving his/her goals?
After discussing treatment goals, the clinician should give the patient the opportunity to discuss his/her concerns about treatment readiness: How hopeful is the patient about adherence to both HIV and psychotropic medications? Some patients may fear the consequences of initiating HAART. For example, the patient may be afraid of:
- The stigma associated with receiving HAART
- Losing government benefits if his/her medical status improves
- Giving up psychological or material benefits associated with the “sick role”
- Returning to an anxious state of uncertainty about the length of time that the medications will be effective
By expressing interest in the patient’s concerns and goals, the clinician may both strengthen the patient-provider relationship as well as provide means for supporting HIV treatment adherence. For example, a patient with a history of trauma might be too anxious to put a potentially toxic medication into his/her body. The patient’s commitment to HIV care may be strengthened by the clinician showing an active interest in learning about the patient’s anxiety and related social concerns:
- Who in the patient’s life is aware and supportive of his/her mental health problems?
- What kind of experience has he/she had with mental health professionals and psychiatric medications?
- Does the patient have health beliefs or cultural beliefs about western medicine that are causing additional anxiety about taking medication?
When assessing readiness for treatment in patients with mental health disorders, the factors in Table 1 should be considered as potential barriers.
|Table 1: Assessment and Approaches to Potential Barriers to Adherence|
The more disorganized and chaotic a patient’s life is, the more important improved treatment-setting characteristics and supportive services become:
- Optimizing Treatment-Setting Characteristics
Offer the following:
- Assurances of confidentiality
- Incentives to keep appointments, such as food and travel vouchers
- More frequent follow-up monitoring
- A comfortable, private, and welcoming clinic setting
Improved waiting time in the clinic, particularly for patients with personality disorders, who often have poor coping skills and a very low tolerance for frustration. Clinicians may consider arranging these patients’ appointments at the beginning of the day or arranging a special “slot” because patients who feel shamed and stigmatized may feel too uncomfortable to wait in an area with other patients. Patients experiencing uncontrollable muscle movement or who have difficulty sitting still for any reason may be disruptive to the waiting area.
- Referrals for Services
Refer patients as needed:
- To adherence support groups and adherence research projects
- For food and nutritional supplements
- To case-management services for assistance in obtaining financial support, housing, and childcare and help with managing the cost or coverage of drugs, medical care, and transportation for traveling to appointments
- To various services, such as outpatient mental health clinics, HIV adult day programs, psychiatric day programs, mental health residential programs, nutritional programs, stress-management services, and professionally or peer-led support groups
Designated AIDS centers, HIV/AIDS social service organizations, and select pharmacies offer educational programs and support groups designed to help patients with medication adherence. Some programs may target particular issues related to adherence. For example, some target their services to patients who are starting their first ARV regimen. Listings of local pharmacies, designated AIDS centers, and local HIV/AIDS social service organizations can be found in Appendix VII: New York State Adherence Services.
V. INITIATING, MEASURING, AND MONITORING ADHERENCE TO ARV THERAPY
Clinicians should assess adherence at every routine monitoring visit by verifying that patients are taking the correct medications, correct number of pills per dose, and correct number of doses per day.
Clinicians should use finite time intervals when inquiring about and quantifying the patient’s self-report. Clinicians should calculate an average response rate based on information obtained at multiple visits to determine a more accurate estimate of adherence.
Clinicians should reassess potential barriers to adherence at least every 3 to 4 months and whenever adherence problems are identified.
When clinicians find it necessary to speak with the patient’s friends or family to assess adherence, permission should be obtained from the patient and the patient should be involved in these discussions.
Measurement of adherence is challenging in both clinical and research settings and usually relies on any one or a combination of the following methods:
- Pill counts
- Pharmacy records
- Electronic pill bottle monitors
- Therapeutic drug monitoring
- Computer-assisted self-interview (CASI) assessment
The advantages and disadvantages of each method are discussed in Appendix A.
When adherence is assessed, finite time intervals should be used. For example, the clinician should ask about the number of doses taken and missed in the past day or past week. Despite its tendency to overestimate adherence, self-report remains the most practical measure in most clinical settings and is most likely to facilitate discussion between patients and providers about the reasons for non-adherence. Self-report is most valid when patients are asked about the number of missed doses within a short time frame (1-7 days), but some studies have found that asking about adherence within the past month is also valid.17,18
In addition to the usual means of assessing adherence, primary care clinicians may need to involve input from licensed mental health providers, case managers, friends, and/or family members of patients with active mental health disorders. When clinicians find it necessary to speak with the patient’s friends or family to assess adherence, permission should be obtained from the patient and the patient should be involved in these discussions.
As ongoing adherence to treatment is monitored, the factors described in Table 1 should be considered.
VI. STRATEGIES TO IMPROVE ADHERENCE
A. Patient-Provider Interaction Strategies
Clinicians should encourage patients to state in their own words what they understand about treatment instructions and to ask questions when additional information is needed.
Clinicians should encourage patients to be honest by responding in a nonjudgmental, supportive manner when patients report non-adherence.
Factors such as the clinician’s language, eye contact, ability to listen, communication skills, and consultation style can foster or hinder collaboration with the patient. Factors that facilitate the relationship include the provision of understandable information, openness to questions, sensitivity and respect for the patient, interest and trust in the patient, and ongoing availability.
A strong patient-provider relationship, including trust and engagement with the provider, has been associated with improved ARV adherence.19
Table 2 lists communication strategies for the enhancement of adherence in patients with mental health and/or substance use disorders. Interventions work best when they are practical, initiated promptly, and individualized to the patient’s characteristics and needs.
|Table 2: Communication Strategies for Clinicians Treating Patients With Mental Health and/or Substance Use Disorders|
When a patient reports non-adherence, the clinician should respond in a way that enhances an open and honest partnership. Clinicians can be supportive by acknowledging that treatment for multiple disorders is challenging because of the increased pill burden and added responsibility and stress of adhering to more than one regimen. Being actively supportive by welcoming the patient’s honesty will mitigate any shame that the patient may feel about his/her poor adherence. The clinician might say, Everyone has difficulty taking medications. The fact that you sometimes remember to take your pills is great. It will help us understand the best way for you take your pills regularly. So, let’s review when you do remember and when you don’t.
B. Health Education Strategies
Clinicians should provide adherence information in an organized manner, both orally and in written form, with easy-to-understand brief statements.
Health educational strategies are most effective when the patient receives information, both orally and in written form, that is well organized and easy to understand. Clinicians should convey education points through the use of brief statements. Important educational topics for clinicians and patients to discuss are given in Table 3.
|Table 3: Health Education Points for Enhancing Adherence|
Educational tools can be helpful; yet these should complement and enhance the direct communication and not replace it. These tools need to be tailored to the patient (using lay language or, when applicable, native language). (See Promoting Adherence to Antiretroviral Therapy.)
C. Motivational Strategies
Motivational strategies can help to address attitudinal barriers and may include providing psychosocial support and involving family members, partners, and social and community organizations.
A therapeutic treatment style that may be used when exploring issues of ambivalence and conflict regarding adherence is motivational interviewing. Through use of motivational interviewing, the clinician attempts to stimulate change by identifying discrepancies in the patient’s current behavior and the patient’s goals of healthier behaviors. When the patient begins to understand how the consequences of current behavior conflict with personal values, the clinician reflects the discordance back to the patient, until the patient realizes that change is necessary and makes the decision to commit to change. This approach encourages patients to describe their behaviors and develop their own solutions.
For patients who have difficulty tolerating direct communication or who may not be able to identify their own needs, use of motivational interviewing may not be suitable. Direct persuasion and aggressive confrontation are not part of motivational interviewing. With this approach, clinicians do not give advice or directives.
1. Principles of Motivational Interviewing
Clinicians should understand the underlying principles of motivational interviewing before using it. The four key components of motivational interviewing are shown in Table 4.
|Table 4: Key Components of Motivational interviewing|
Expressing Empathy: To gain a better understanding of the patient’s perspective, the clinician actively listens without being judgmental. Through this reflective listening, the clinician may find that the patient is not ready or willing to stop engaging in a particular behavior or to adopt a new behavior. In this case, the initial focus is on building therapeutic rapport and supporting the patient, instead of verbally suggesting change.
Supporting self-efficacy: Self-efficacy refers to a person’s belief in his/her ability to successfully carry out a specific task. The clinician should support the patient’s belief in his/her ability to change by giving the patient examples of positive change and emphasizing the importance of taking responsibility. When the patient feels strong support from the clinician, his/her sense of self-efficacy is enhanced.
Avoiding argumentation and rolling with resistance: Motivational interviewing differs from other approaches to behavior change in that it does not label patients (e.g., “non-compliant” or “difficult”). When faced with a patient’s resistance, it is important for the clinician to allow the resistance to be expressed. Through this process, the clinician reflects the patient’s questions and concerns back to the patient, so that the patient may further examine the possible alternatives to this resistance. The patient then becomes the source of the positive actions that could be taken, does not feel defeated in sharing his/her concerns, and is able to take the risk to express feelings.
Discovering discrepancies: Once patient-provider rapport has been established, the goal is to discover and amplify discrepancies between present and past behavior and future goals. This is achieved through examination of the consequences of continuing an unhealthy behavior and often involves discussing the advantages of adopting a new behavior. The patient will then be able to present the argument for change and begin to realize the need for change.
2. Motivational Interviewing Approach
The acronym OARS outlines the basic approach to interactions in motivational interviewing:
Open-ended questions invite patients to provide more information than yes or no and will encourage them to explore their own motivators for change. This strategy lets the patient know that the clinician is interested in his/her situation, while allowing the clinician to obtain needed information and insight into the patient’s issues.
Affirmations provide opportunities for clinicians to recognize the patients’ strengths.
Reflective listening helps the clinician identify areas of ambivalence. Reflective listening is often challenging because the clinician may need to form assumptions about the meaning of the patients’ statements in order to articulate them back to the patient. It is particularly important to reflect back any statements that indicate that the patient is motivated to change. Simple reflections acknowledge the patient’s statements about disagreements, feelings, or perceptions. Double-sided reflections acknowledge both what the patient has said and the ambivalence. Amplified reflections reveal the patient’s ambivalence in a slightly exaggerated form.
Summaries will emphasize the main points of the discussion and should capture both sides of the patient’s ambivalence. The summary can also be used to shift focus or direction when the patient is expressing impassible resistance. After the clinician summarizes, he/she should invite the patient to make any corrections.
More resources on motivational interviewing are available at http://www.motivationalinterview.org.
D. Cognitive-Behavioral Strategies
Cognitive-behavioral strategies can be used when mild memory difficulties are present or when the individual feels overwhelmed by the pill-taking challenge. Practical strategies include the following:
- Simplifying regimens: decrease dosing frequency, decrease number of pills
- Personalizing drug schedules: tailor treatment to lifestyle, link medications to daily activities
- Using reminders: written instructions or illustrations, pill boxes, timers, diaries, phone calls from family or friends
- Using available pharmacy services: pharmacies may call patients to remind them about need for refills, deliver medications, provide professional regimen reviews
If memory deficits are pronounced, after evaluation by a neurologist, the assistance of relatives, home health aides, or visiting nurses should be sought. Before initiating treatment or when switching regimens, a practice run without active medication can help a client feel confident about his/her ability to adhere to ARV therapy.
For more information regarding cognitive impairment among HIV-infected patients, see Cognitive Disorders and HIV/AIDS.
E. Directly Observed Therapy
Some medical programs and HIV/AIDS social service organizations have programs that provide ARV directly observed therapy (DOT) for outpatients (see Appendix A). Although shown to be effective in several non-randomized trials,20,21 published data are limited that compare the efficacy of DOT with other modalities for successful treatment of HIV disease. DOT and modified DOT (MDOT) may facilitate adherence through direct supervision of pill-taking. These programs may also include psychoeducational and social service components, as well as behavioral reinforcements. DOT and MDOT may be the only effective means of ensuring treatment adherence in some patients with severe and persistent mental health illness, those with dual mental health and substance use disorders, and those who are living in unstable and disorganized social conditions.
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|Table A-1: Advantages and Disadvantages of Adherence Measures|