ADHERENCE TO ANTIRETROVIRAL THERAPY AMONG HIV-INFECTED PATIENTS WITH

MENTAL HEALTH DISORDERS

I. INTRODUCTION
RECOMMENDATION:
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

Key Point:
The most effective means of promoting adherence in patients with mental health disorders is
through adequate stabilization of their mental health and integration of mental health treatment
into the comprehensive treatment plan.

II. COORDINATION OF CARE

RECOMMENDATIONS:
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 patients 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 followup 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 patients 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 patients overall care. A licensed mental health
professional may play the primary role as silent partner thereafter.

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 patients methadone program.

III. PREDICTORS OF AND BARRIERS TO ADHERENCE

A. Predictors
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

Key Point:
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.

B. Barriers
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 patients 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
Homelessness
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
RECOMMENDATIONS:
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
Patients 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 patients 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.
Listings of local pharmacies, designated AIDS centers, and local HIV/AIDS social service
organizations can be found in Appendix A.
4

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 patients goals are the same as the clinicians goals. For example, the clinicians main
goal may be viral load suppression, whereas the patients 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 patients 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 patients 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 patients commitment to HIV care may be strengthened by the
clinician showing an active interest in learning about the patients anxiety and related social
concerns:
Who in the patients 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
Barriers
Assessment
Possible Approaches
Stage of acceptance
Educational approaches; motivational
Is the patient in denial?
interviewing; medication education
support group; consider referral for
counseling
Mental health
Treat the underlying mental health
Is there an untreated mental
symptoms; refer for treatment; silent
health disorder?
partner with mental health provider
Cognitive function
See Cognitive Disorders and
Does the patient understand
HIV/AIDS; see Table 2; see below
instructions?
(Section VI, D. Cognitive-Behavioral
Strategies)
Language barriers
Translator or sign language interpreter;
Do the clinician and patient
someone who does not know the
speak the same native
patient may be preferable
language? Is the patient deaf
or does the patient have a
hearing impairment?
Substance use
See Substance Use Guidelines
Is there active substance use
or inadequate substance use
treatment?
Presence and severity of
Treatment adherence support program;
Are any of the following
particular symptoms
screen for common mental health
symptoms present?
disorders; if symptoms are due to a
Helplessness; hopelessness;
negativity; lack of motivation; personality disorder, see
apathy; low energy and easy
Management of Patients with
Personality Disorders; consider full
fatigue; stigma and shame
mental health evaluation
about HIV or mental health
disorders; low self-esteem;
depression; and inadequate
coping styles, especially under
stress.15,16
Support network and social
With patients consent, consider
What is the degree of support
stability
involving family, friends, HIV social
from family and friends? Is
service organization, case management
there lack of social stability
services
(e.g., housing problems, legal
issues)? Are children or other
dependents in the home? Is
there domestic violence?
History of abuse or violence
See Trauma and Post-Traumatic Stress
Does the patient have PTSD
symptoms?
Disorder in Patients With HIV/AIDS
Medication concerns
Consider regimen that accommodates
Has the patient had poor past
lifestyle; avoid regimens with possible
experiences handling side
side effects that would likely lead to
effects? Would the regimen
poor adherence
fit with the patients daily
routine? Is there a risk of
drug-drug interactions?

The more disorganized and chaotic a patients life is, the more important improved treatmentsetting 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 A and at http://www.nyhiv.org/resources_programs.html.

V. INITIATING, MEASURING, AND MONITORING ADHERENCE TO ARV THERAPY

RECOMMENDATIONS:
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
patients self-report. Clinicians should calculate an average response rate based on
information obtained at multiple visits to determine a more accurate estimate of adherence.
7

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 patients 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:

Self-report
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 B.

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 patients 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
RECOMMENDATIONS:
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.
8

Factors such as the clinicians 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.

Key Point:
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 patients characteristics and needs.

TABLE 2
COMMUNICATION STRATEGIES FOR CLINICIANS TREATING PATIENTS WITH MENTAL
HEALTH AND/OR SUBSTANCE USE DISORDERS
Proceed slowly; repeat key points; have patients repeat back instructions in their own
words
Teach science in simple terms
Allow honest reporting of non-adherence
Use translator or sign language services when language barriers exist
Use pictures and/or written material

Involvement of the patient as a partner in his/her care will help foster trust and build a strong
patient-provider relationship. Strategies to involve patients as partners in their care include the
following:
Asking the patient to repeat medication information regularly
Encouraging the patient to ask questions and providing clarifying information
Inviting the patients feedback and opinions and role-playing problem scenarios
Involving the patients family or friends, mental health provider, and case managers in
treatment recommendations and supervision
Having the patient and provider agree on an accepted regimen and encouraging the use of
the simplest effective regimen (e.g., number of doses, number of times)
Having the patient develop a calendar or schedule for taking medications
Performing a practice run without active medication (e.g., using candy, vitamins)
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
patients honesty will mitigate any shame that the patient may feel about his/her poor adherence.
9

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, lets review when you do remember and when you dont.

B. Health Educational Strategies

RECOMMENDATION:
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
The treatment regimen and treatment options
Drug side effects, with special attention to psychiatric side effectshow to address or
avoid
Drug-drug interactionshow to determine whether interactions are occurring and what
to do about them; which drugs do not have any known risks for or lack of likelihood for
drug-drug interactions with prescribed and alternative medications, methadone,
recreational drugs, and/or alcohol
The importance of treating comorbid disorders, such as mental health and substance use
disorders
The possible impact of HIV on mental health symptoms

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 native language). (See Adherence - Best Practices booklet.)

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
patients current behavior and the patients goals of healthier behaviors. When the patient begins
10

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
Component
Involves
Expressing empathy

Understanding and being aware of and sensitive to the

feelings, thoughts, and experiences of another.
Accomplished through reflective listening.

Supporting self-efficacy

Supporting the patient with the sense that an individual

can identify and meet ones needs and goals.

Avoiding argumentation and

rolling with resistance

Listening to the patients resistance to change.

Working collaboratively with the patient to develop
his/her input regarding the treatment plan.

Discovering discrepancies

Helping patients identify discrepancies between their

current behavior and desired future behavior.

Expressing Empathy: To gain a better understanding of the patients 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 persons belief in his/her ability to successfully
carry out a specific task. The clinician should support the patients 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, it enhances his/her
sense of self-efficacy.

11

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 patients resistance, it is important for the clinician to allow the
resistance to be expressed. Through this process, the clinician reflects the patients 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 patients 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 patients statements about disagreements, feelings, or perceptions.
Double-sided reflections acknowledge both what the patient has said and the ambivalence.
Amplified reflections reveal the patients ambivalence in a slightly exaggerated form.
Summaries will emphasize the main points of the discussion and should capture both sides of the
patients 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.

12

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: HIV-Associated Dementia and Delirium.
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 B). 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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development of drug resistance in an indigent population. AIDS 2000;14:357-366.
2. Montaner JSG, Reiss P, Cooper D, et al. A randomized, double-blind trial comparing combinations of nevirapine,
didanosine, and zidovudine for HIV-infected patients. JAMA 1998;279:930-937.
3. Bangsberg DR, Perry S, Charlebois ED, et al. Non-adherence to highly active antiretroviral therapy predicts
progressions to AIDS. AIDS 2001;15:1181-1183.
4. Lucas GM, Chaisson RE, Moore RD. Highly active antiretroviral therapy in a large urban clinic: Risk factors for
virologic failure and adverse drug reactions. Ann Intern Med 1999;131:81-87.

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5. Gordillo V, del Amo J, Soriano V, et al. Sociodemographic and psychological variables influencing adherence to
antiretroviral therapy. AIDS 1999;13:1763-1769.
6. Avants SK, Margolin A, Warburton LA, et al. Predictors of nonadherence to HIV-related medication regimens
during methadone stabilization. Am J Addict 2001;10:69-78.
7. Starace F, Ammassari A, Trotta MP, et al. Depression is a risk factor for suboptimal adherence to highly active
antiretroviral therapy. J Acquir Immune Defic Syndr 2002;3(Suppl 3):S136-S139.
8. Chesney MA, Ickovics JR, Chambers DB, et al. Self-reported adherence to antiretroviral medications among
participants in HIV clinical trials: The AACTG adherence instruments. AIDS Care 2000;12:255-266.
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Life-steps and medication monitoring. Behav Res Ther 2001;39:1151-1162.
10. Kalichman SC, Ramachandran B, Catz S. Adherence to combination antiretroviral therapies in HIV patients of
low health literacy. J Gen Intern Med 1999;14:267-273.
11. Haubrich RH, Little SJ, Currier JS, et al. The value of patient-reported adherence to antiretroviral therapy in
predicting virologic and immunologic response. AIDS 1999;13:1099-1107.
12. Arnsten JH, Demas PA , Grant RW, et al. Impact of active drug use on antiretroviral therapy adherence and viral
suppression in HIV-infected drug users. J Gen Intern Med 2002;17:377-381.
13. Walkup JT, Sambamoorthi U, Crystal S. Use of newer antiretroviral treatments among HIV-infected Medicaid
beneficiaries with serious mental illness. J Clin Psychiatry 2004;65:1180-1189.
14. Community Health Advisory and Information Network. Report 2004-1: Service Gaps and Utilization in the
Continuum of Care in NYC. New York: HIV Health and Human Services Planning Council. Available at:
http://www.nyhiv.org/pdfs/chain/CHAIN%20Service%20Gaps%20Report%202004_12.pdf.
15. Chesney MA. New antiretroviral therapies: Adherence challenges and strategies. Evolving HIV Treatments:
Advances and the Challenge to Adherence, 37th ICAAC Symposium, Toronto, Canada, September 1997.
16. Singh N, Squier C, Sivek C, Wagener M, et al. Determinants of compliance with antiretroviral therapy in
patients with human immunodeficiency virus: prospective assessment with implications for enhancing compliance.
AIDS Care 1996:8:261-269.
17. Walsh JC. Responses to a 1 month self-report on adherence to antiretroviral therapy are consistent with
electronic data and virological treatment outcome. AIDS 2002;16:269-277.
18. Giordano TP, Guzman D, Clark R, et al. Measuring adherence to antiretroviral therapy in a diverse population
using a visual analogue scale. HIV Clin Trials 2004;5:74-79.
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20. Stenzel MS, McKenzie M, Adelson-Mitty J, et al. Enhancing adherence to HAART: A pilot program of
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FURTHER READING
Osterberg L, Blaschke T. Adherence to medication. N Engl J Med 2005;353:487-497.

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APPENDIX A
NEW YORK STATE ADHERENCE SERVICES CONTACT LIST

AIDS Community Resources

Casey Cleary-Hammerstadt
Deputy Executive Director
627 West Genesse St.
Syracuse, NY 13204
(315) 475-2430
cch@aidscommunityresources.com
Albany Medical College
George Clifford, Ph.D.
AIDS Program Administrator
47 New Scotland Av
M Code 158
Albany, NY 12208
(518) 262-4432
Cliffog@mail.amc.edu
Albert Einstein College of Medicine
Dr. Daniel Kaswan
Director, HIV Medical Services
1300 Morris Park Ave
Bronx, New York 10461
(718) 665-7000
Bellevue Hospital Center
Lucy Grugett
Assistant Director, Grants Management
462 First Avenue, 12 E 12
New York, NY 10016
(212) 562-5201
Lucy.Grugett@bellevue.nychhc.org
Beth Israel Medical Center
Dr. Laurie Greenberg-Cardillo
Manager, Mental Health and Treatment Adherence
First Avenue at 16th Street
New York, New York 10003
(212) 420-2617
lgreenb@bethisraelny.org

15

Columbia University School of Public Health

Emilyn Nishi, Project Director
722 West 168th Street, Rm 1111
New York, NY 10032-2603
(212)305-4104
EN2008@Columbia.edu
Community Health Network
Danita Djelosk
Treatment Adherence Program Coordinator
87 North Clinton Ave., 4th Floor
Rochester, NY 14604
(585) 244-9000, ext. 247
ddjeloski@achcrochester.org
Erie County Medical Center
Kathleen Walsh MSW, CSW
AIDS Program Administrator
462 Grider St
Buffalo, NY 14215
(716) 898-4481
kwalsh@ecmc.edu
Harlem Hospital Center
Sharon Mannheimer, MD
Program Director
Harlem Adherence to Treatment Support in Primary Care
506 Lenox Avenue, Room 3101A
New York, NY 10037
(212) 939-2948
Sbm20@columbia.edu
Kings County Hospital Center
John Krevitt, MPH
Associate Director
451 Clarkson Avenue
Brooklyn, NY 11203
(718) 245-2821
Krevittj@nychhc.org
Montefiore Medical Center
Jorge Rodriguez
Administrative Director
HIV/AIDS Services
111 East 210th Street
Bronx, NY 10467-2490
(718) 920-2199
Jorrodri@montefiore.org
16

Nassau University Medical Center

Getachew Feleke
Chief, Infectious Diseases
2201 Hempstead Turnpike
Mailbox 73
East Meadow, NY 11554
(516) 572-6506
gfeleke@ncmc.edu
New York Presbyterian Medical Center
Andrew Torres
Coordinator, Education and Outreach
180 Fort Washington Avenue, #624
New York, NY 10032-3710
(212) 305-8925
Ant9009@nyp.org
North Shore Long Island Jewish Medical Center -Schneider Childrens Hospital
Dr. Susan Schuval
Section Head Pediatric Immunology
865 Northern Blvd. Suite 101
Great Neck, NY 11021
(516) 622-5070 or 5064
Schuval@lij.edu
SUNY Downstate Medical Center
Alexa Kazim
Administrative Director
STAR Health Center HIV Service
Box 1240, 450 Clarkson Avenue
Brooklyn, NY 11203
(718) 270-3818
Alexa.kazim@downstate.edu
Village Center of Care
Laurie Newman, MPH
Director of Research
154 Christopher Street
Suite 3A
New York, NY 10014
(212) 337-5854
laurien@vcny.org

17

Westchester Medical Center

Richard Birchard, MS
Coordinator, HIV Clinical Education and Adherence
AIDS Care Center
BHC-S022
Valhalla, NY 10595-1689
(914) 493-1362
birchardR@wcmc.com

18

Method
Directly Observed Therapy

APPENDIX B
ADVANTAGES AND DISADVANTAGES OF
ADHERENCE MEASURES
Advantages
Disadvantages
100% adherence, in theory
Labor intensive
Ideal method for institutional
settings (prisons, nursing homes,
residential treatment programs,
etc.)

Electronic monitoring

Best correlation with virologic

outcomes
Allows more detailed view of
non-adherence patterns
Most accurate measure

Not practical for complex regimens

with multiple doses and/or dietary
restrictions
May compromise confidentiality
Expensive and generally reserved
for clinical trials
Precludes use of pillbox
Fails if multiple medications are
kept in a single bottle or if multiple
doses are taken out at one time
Requires carrying the container
Subject to pocket doses (removing
more than one dose at a time)
Does not guarantee that the patient
took the medication

Hematologic monitoring using

either complete blood counts
or expanded chemistry panels

Confirms patient reporting

Only effective for certain drugs:

Zidovudine, Stavudine (increased
MCV); Indinavir (increased
bilirubin)
Not always reliable

Modified Directly Observed

Therapy (observation of most
but not all medication doses)

Pharmacy refill monitoring

100% adherence, in theory

Labor intensive

Ideal method for ambulatory

settings

Concern for development of

resistance if plan not followed

Easy, minimal time commitment

Patients may use more than one

pharmacy

Timely refilling of prescriptions

correlates well with adherence
Most successful when limited to
patient using one pharmacist
Is a useful adjunct to self-report
Effective in understanding
adherence behavior in large
populations

19

Does not equate with medicationtaking

Pill counts

Useful adjunct to self-report

Unannounced pill counts may be
more accurate
Direct costs minimal

Tends to overestimate adherence

because of pill dumping before
visit
Casts provider in the role of
medication monitor and not ally or
advocate
Indirect costs a concern due to time
constraints
Does not prove that patient actually
took medication
Most poorly correlated with actual
adherence

Provider estimation

Self-report

Easily obtained using patient

interview or questionnaire
(report of non-adherence is more
reliable than report of
adherence)

Correlation is dependent on
patients relationship with staff
Individuals may give providers what
they perceive as socially desirable,
right responses

Inexpensive

Therapeutic drug monitoring

Overestimates adherence

Low drug levels confirm nonadherence, but therapeutic drug

levels do not confirm adherence

Pharmacokinetic levels for most

drugs have not been well established
Only confirms the pre-measurement
adherence, long-term adherence still
unknown

Viral load

Can correlate with adherence

Although poor adherence is
associated with virologic failure,
not all individuals with virologic
failure will be poor adherers

20

Does not necessarily indicate nonadherence

May overestimate adherence
Virologic failure can be indicative
of drug resistance