Published in the Bulletin of Experimental Treatments for AIDS January 1999 issue, by the San Francisco AIDS Foundation.

January 1999 Table of Contents

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Adherence to HAART: An Interview with William Holzemer

Tadd Tobias

William Holzemer, RN, PhD, Fellow of the American Academy of Nursing (FAAN), is Professor and Chair of the Department of Community Health Systems at the University of California at San Francisco (UCSF) School of Nursing. As director of the International Center for HIV/AIDS Research and Clinical Training in Nursing, he has focused much of his research on the quality of nursing care for persons with HIV disease. BETA spoke with Holzemer after the 12th World AIDS Conference in July 1998.

Chronic Illness: the Challenge of Adherence

BETA: How much of the current problem with adherence could be solved by less difficult drug regimens?

WH: There is tremendous need to simplify regimens, to reduce or minimize side effects, and to eliminate restrictions around food and fluid intake. This is very important and should be encouraged. At the same time, research clearly shows adherence rates of 50-75% in most adults with other chronic illnesses. With hypertension, for example, some people take medication only in the morning, and some in the morning and in the evening. A lot of people get tired, go to bed, and forget their evening dose. This will continue in HIV care, as well.

We do have regimens with the potential to be followed. Side effects and restrictions have been reduced, but these anti-HIV drugs are powerful agents. They will continue to be difficult to take, and simplifying the regimen is only part of the solution. We still need strategies to help people live on a daily basis with their medication regimens. Skills-building, memory systems, and working with providers is important. We need to make it very clear that writing the prescription is only a very early step. Then the client must actually fill it, take it, and refill it -- for life, given what we know now. The bottom line is that the issue of adherence remains with us, front and center.

Demographics and Predictors of Adherence

BETA: What about someone who wants to begin therapy but whose provider is reluctant because of concerns about the patient's perceived ability to be adherent?

WH: Providers need to understand that obvious client demographics like age, ethnicity, gender, and history of drug use are not particularly related to a person's ability to adhere to therapy. In some studies (not involving HIV), intent to adhere was a big predictor of adherence. People who are very strong and who say that they are ready for treatment have a very good chance of successfully maintaining HAART, even if their personal life is in chaos and their resources are minimal. We also know that good intentions do not always hold up. We see this in substance use recovery programs. People who have good intentions may relapse. So we have to be prepared for that also.

It then clearly becomes a professional judgment. If the provider is reluctant and the client actively and aggressively wants to start therapy, it is more of a dilemma. A provider might want to wait when there is some indication that a person may have difficulty adhering, not only for medical reasons, but also for interpersonal and social reasons. I would suggest that the provider needs enough time with that person to talk these issues through.

The work by UCSF researchers David Bangsberg, MSc, MS, MPH, and Andrew Moss, PhD, MPH, suggests that people who are homeless or marginally housed have the potential to be extremely adherent. On the surface, one would think that their lives are in chaos and disarray. Yet actually they may be very ordered and regimented in their lives. A person has to get in line pretty early to get a bed at a shelter. If we can become smart enough to support people through the shelter system and the food lines, we can probably create an adherence support strategy to help marginalized clients.

It is a totally different situation for the busy active professional who gets involved in a big meeting and forgets his or her medication. This problem should take care of itself by improved therapies that eliminate the mid-day dose.

Psychological Well-being: Quality of Life and Depression

BETA: One of the factors you found to be associated with adherence was quality of life. How did you define and measure this?

WH: Holly Wilson, RN, PhD, FAAN, a professor at the UCSF School of Nursing, and I did a series of interviews with later-stage AIDS patients. We wanted to know if quality of life is different for people who are sicker.

We developed three clusters of factors to answer this question. One we called "avoiding the fear zone." The "fear zone" includes things like not enjoying life, being frightened over loss of control, feeling disconnected, regrets, and fear. "Loss" was the second factor. Loss of their independence, and loss of their looks or their physical appearance. Loss of things that they had hoped to do but did not get to do. The third factor was "cherishing the environment." This was a positive construct. Items on the scale included having a meaningful life, feeling comfortable and well cared for, using time wisely, and taking time for important things. It is an existential, life-engagement concept.

Although these factors were originally developed for sicker clients, they seem to work very well for healthier persons with HIV. I believe it provides a different kind of information than the classic quality of life, functional status measures.

At the 12th World AIDS Conference in July, we reported that cherishing the environment was related to medication adherence. People who had higher scores (i.e., having a meaningful life and feeling well-cared for) self-reported significantly greater adherence.

BETA: What about loss and avoiding the "fear zone"?

WH: People living with HIV confront the issue of loss, even if initially it is more intellectual than actual. In this study, what we called "loss" and "avoiding the fear zone" were not predictive of adherence (defined as medication adherence, following providers’ advice, and keeping appointments).

Because these were healthier patients, I think it makes sense that the "fear zone" and the "loss" issues played a less significant role. But the life-engagement concept, "cherishing the environment," was significantly related.

BETA: What did you learn about depression and its role in adherence?

WH: Symptoms of depression were a predictor of non-adherence. In our national sample of over 700 people in seven cities, two-thirds of our volunteers showed significant symptoms of depression, as measured by the Center for Epidemiological Studies Depression Scale (CES-D), which is a well-established, standard scale. It is not a clinical diagnosis, but one obviously is related to the other. Significant symptoms of depression can have an effect on sleep, quality of life, nutrition and, possibly, a direct effect on adherence. If people are aware of their depression, they know to get help if it gets worse. It is treatable, and we need to heighten everyone's awareness of its significance in some clients' lives.

It would be ideal to make screening for depression a part of a full history and physical exam for new clients. There are three or four simple scales that can easily be used in a clinical setting. My observation is that one cannot do all these things at once. It might have to be a progression over time. If a provider is working with someone starting HAART who is treatment-naive, he or she should have enough time to think about depression. This may be a little harder for people who are already being treated.

Adherence Strategies and Patient Education

BETA: Some people report feeling guilty or inadequate when they miss a dose. They may quit the entire regimen if they feel like failures. What can be done about this?

WH: As difficult as it is, building the client's self-esteem is part of the adherence strategy. Part of it has to be developing coping strategies for when a person misses a dose. The bottom line is, "Here is the regimen. This is how you are supposed to take it. The consequences are pretty dramatic if you chose to self-medicate and change the regimen." I think we ought not to sugar-coat it.

BETA: Where extensive AIDS services exist, a multidisciplinary care team may include physicians, nurses, dietitians, pharmacists, dentists, case managers, social workers, and mental health professionals. What can be done in the absence of such a support network?

WH: First, availability of multidisiplinary care does not necessarily correlate with whether people access it. There are a significant number of people (for example, the severely mentally ill or active substance users) who may not be accessing these services. We need to make sure we reach everyone.

In the big picture, we need to move on many fronts. First and foremost, we need to work with the clients. The patients themselves ultimately control the degree to which they chose, or remember to chose, to be adherent. We also need to train the providers, to collaborate with the pharmaceutical companies, and to work with pharmacies themselves. Our emphasis should be on education and skills-building with clients.

BETA: How does that happen?

WH: It can happen through primary care -- the physician, the nurse practitioner. It can happen through peer support groups, for example, through linking it to methadone treatment centers. I do not think all of the services you mentioned need to be available at every site. But it is also very clear that any one of these services alone will not be sufficient to meet all of the clients' needs.

For a person just starting anti-HIV therapy, there is so much to learn that it is clearly overwhelming. In order to be successful, clients need a structured support system. Some of the larger AIDS practices here in San Francisco encourage patients to call their office staff or a nurse practitioner or physician. Kaiser Permanente San Francisco has established a general nurse referral system for their members to consult. They also offer an HIV medication hotline which connects members to a pharmacist who can research questions and provide answers. Other approaches include more frequent office appointments and consultations with a dietitian or a medication nurse.

I have seen a couple of pharmacy models that are really outstanding. When a client begins a difficult new therapy, time is spent teaching them how to use it. Obviously this is not done while standing in line at the counter trying to pick up medication -- that does not work. Settings are important.

Another strategy is the "jelly bean trial." A provider can package a sample of different colored jelly bean "medications" and let clients try to take them on schedule, to get an idea about how it might really work and how they feel about it. That is one concrete way of helping a person experience what it might be like to be on a complicated regimen. Obviously this has nothing to do with the side effects of a regimen, just the mechanics of it. Can a person actually maintain the pill regimen, however they live, wherever they live? Can they access water or whatever else is necessary to take the medications?

The problem is that we do not have many systems in place, and few primary care providers have any skill at this. Maybe this suggests some strategies for interventions. It is extremely time-intensive, but someone could prepare those jelly bean packets. An office nurse could be available to provide telephone support and troubleshoot adherence problems for clients.

Of course providers do not have jelly beans in their office, nor do they have a person available to call the patient and find out how things are going. Could providers have a resource person for clients to consult for more in-depth reinforcement, whether it is a peer counselor or a medication nurse? This is a bit controversial.

Some providers feel that in order to do comprehensive care, they want that time with their client. This is in part how they build trust. It is how they come to understand the client -- being with them long enough to see mistakes they might make. Many providers want to do this first phase of the work themselves. I think it is going to vary by setting, but I do not think we should create structures that put distance or create barriers between the client and the provider.

Alternative Treatment, Side Effects and Self-Care

BETA: Have you seen any data that suggests that alternative and complimentary treatment is an area that could contribute to the enhancement of adherence, or quality of life, or management of symptoms?

WH: There is now a recognition by organized science of the important contribution these varied techniques can have. Not just in HIV care, but in all illnesses. There is a growing research base on the effect of massage. There have been studies of acupuncture showing efficacy in helping people sustain substance use recovery.

At the same time, I think it is probably fair to say that there is still more we do not know than what we do know. Here at UCSF, Donald Abrams, MD, is looking at the effect of marijuana on appetite. I would say that it is documented, but is it adequately documented? The word on the street is that marijuana is not only very clearly an appetite stimulant, but is also useful in supporting general well-being and controlling nausea, in people with cancer as well as HIV. Some of that nausea is disease-related and some of it is medication-related.

Medical marijuana is not a cure, but treating chronic illness is not about curing people. It is about enhancing quality of life and maximizing functional capacity. There are a lot of strategies, from stress reduction to massage to acupuncture; these may simply feel good. There is a rationale for using them just from a human daily living perspective. As one struggles living with a chronic illness, whatever makes a person feel good ought to be accessible.

It gets more complicated when we start labeling it a medical treatment and people want to get reimbursed for it. That is another whole set of arguments -- the need to demonstrate "medical efficacy." There is no question that some of these therapies do help, but that is much harder to demonstrate.

UCSF has recently opened the Osher Center for Integrative Medicine. The whole purpose of this is to mainstream alternative and complimentary therapies. One area of interest is nutrition. Where is the line between nutrition and medication? Opposite ends of the spectrum are really easy to figure out. But is vitamin B₁₂ nutrition, or is it medication?

BETA: People are pre-treating for symptoms associated with HAART. To be prepared for possible side effects, people are leaving their doctor's office with prescriptions to treat nausea, diarrhea, headaches, insomnia, skin rashes, etc.

WH: I think the non-pharmacological interventions we have are under-used. Potentially these are at least as important, for a lot of different reasons. Many of the medicines used to treat side effects have their own adverse events associated with them.

BETA: What symptom management and self-care resources can you recommend?

WH: There are a number of Internet-based projects that are quite interesting. For example, The Body web site has as an ongoing forum with J.B. Mollaghan, RN, AIDS Certified Registered Nurse (ACRN), NP, from San Francisco General Hospital. Although it is more about symptoms than adherence, individuals can "ask an expert," and can also look at previous questions and answers. HELIX is another web site. It is designed for healthcare professionals, but anyone can use it.

There are techniques of self-care symptom management. For example, Managing the Side effects of Chemotherapy and Radiation Therapy: A Guide for Patients and Their Families by Marylin J. Dodd, RN, is a useful book on self-care approaches in managing difficult illness.

Managed Care, "Closed Systems," and Confidentiality

BETA: In the U.S., provider time with patients is extremely limited. How do we ensure that providers have sufficient time to educate patients?

WH: Most providers somehow find the time to do what they feel needs to be done. I know about the pressure, but my experience in listening to physicians and nurse practitioners is simply that they capture the necessary time.

The bigger issue is reimbursement and the carve-out for HIV care. For example, we do not give an organ transplant patient a seven-minute office visit. We require and we demand more time because of their complicated situation. I think managed care plans have come to accept that there is a greater time demand involved in HIV care delivery. I would find it quite surprising if in most managed care settings HIV clients are forced to experience the same reduced amount of time that others receive. Healthcare providers cannot do their work in those short time slots, and I think providers are just facing the consequence. This is partly why being in AIDS care is so difficult.

I think that "closed systems" like Kaiser Permanente have advantages in terms of care coordination, but also have some confidentiality issues. Do we really want all that personal medical information fed so fluidly back and forth? For example, a patient may not know that their physician is told when they receive medications refills from the pharmacy. I think patients need to know, because part of a person's coping system may be to hold some things back. It is a real ethical issue if patients are unaware of this mechanism. I think it is great if they agree to it. Then when they make a mistake and do not follow up, it is just a matter of saying, "Oh yeah, I forgot. You get that information, right?" I just think they need to be informed.

Concluding Remarks

WH: Having HIV is obviously a life-altering event, and starting complicated therapy is also a life-altering event. I think that at first everybody thinks they can live their life as before and just add treatment. A few people can, initially. But it is tough. HAART is one of those life-altering events that requires physical and technical planning -- and the larger social planning -- to help people understand what they are getting into and how they are going to sustain it over time.

When we have the luxury of time, we should ask clients, "How are you going to make space in your life for this? What are you going to do differently? If you are working, can you take a month off when you initiate therapy?" In one of the sessions on adherence at the July AIDS conference, a suggestion was to have someone live with you the week you start treatment. There are many different social strategies that may or may not work for people. But we have to emphasize that this is not just "business as usual."

BETA: Helping patients with adherence must be a multidisciplinary approach, but it seems like it will be a lot of work for nurses. Do you agree?

WH: On the one hand, yes. Nurses have a long history of patient education. Supporting evidence shows that education shortens the length of hospital stays and improves satisfaction with care. There is no question that some of the skills are there already. But I do think that peer counselors might end up doing a lot of the work, for example if there is one rural nurse for a large number of people. The work can be done by and is appropriate for nurses, but it is also setting- and structure-dependent. Nurses have the skills, but they need training in all of the complicated symptoms and drug interactions in order to be effective educators.

BETA: How do we proceed?

WH: The important thing is how we create systems. And those systems involve people, supplies, and all the interventions that maximize people's potential to be successful. I think that is the question. Nurses have a lot to contribute, but by no means is it uniquely up to them. I do not think it belongs uniquely to anybody. It must be a collaborative effort.

William Holzemer invites comments from readers. Please contact:

William L. Holzemer, RN, PhD, FAAN
Chair, Department of Community Health Systems
School of Nursing, N505G
University of California, San Francisco
521 Parnassus Avenue
San Francisco, CA 94143-0608
Phone: 415-476-2763
Fax: 415-476-6042
E-mail: bill_holzemer_at_nursing@ccmail.ucsf.edu

References

Turner, J.G. and others. History of drug use and adherence in HIV+ persons. 12th World AIDS Conference. Geneva, Switzerland, June 28-July 3, 1998. Abstract 32366.

Resources

Listed below are resources which may help support adherence to complicated drug regimens. Selections reflect current and reliable information about managing common symptoms, drug-drug interactions, drug-food interactions, and drug side effects.

Books

AIDS Care at Home: A Guide for Caregivers, Loved Ones and People with AIDS, by Judith Greif and Beth Ann Golden. John Wiley and Sons, Inc., New York. 1994.

The HIV Drug Book, by the staff of Project Inform. Preface by Donald Abrams and introduction by Martin Delaney. Pocket Books, New York. Second Edition, 1998.

Home Care Guide for HIV and AIDS: For Family and Friends Giving Care at Home, edited by Peter S. Houts. American College of Physicians. 1997.

Managing the Side Effects of Chemotherapy and Radiation Therapy: A Guide for Patients and their Families, by Marylin J. Dodd. UCSF Nursing Press, San Francisco. 1996.

Hotlines and Telephone Consultation Services

AIDS in Prison Project Hotline -- advocacy, education, and support for prisoners living with HIV and their families. Hotline phone: 212-674-0800 (collect calls accepted); 3:00pm-8:00pm EST. Sponsored by the Osborne Association (phone 212-673-6633; fax 212-979-7752).

National HIV Telephone Consultation Service -- a free service for healthcare providers staffed by clinicians based at San Francisco General Hospital. Questions are answered immediately when possible, and most questions are answered within two hours. Phone: 800-933-3413; Monday-Friday 7:30pm-5:30pm PST. Voicemail available 24 hours a day, seven days a week.

Project Inform Treatment Hotline -- extensive treatment education materials available, including drug interactions, typical side effects, and dosing schedules. Phone: 800-822-7422 or 415-558-9051; Monday-Friday 9:00am-5:00pm, Saturday 10:00am-4:00pm PST. Web address: www.projinf.org

San Francisco AIDS Foundation California AIDS Hotline -- information on all aspects of HIV/AIDS available in English, Spanish, and Filipino. Phone: 800-FOR-AIDS.

World Wide Web

The Body web site (www.thebody.com/experts.html) -- leading nurse practitioner J.B. Mollaghan, NP, ACRN, and expert AIDS physicians answer questions about anemia, opportunistic infections, mental health, and other issues.

Clinical Care Options for HIV (www.healthcg.com/hiv/treatment/interactions) -- this site includes a drug-drug interaction program divided into two components: an interactive program that allows one to select a multidrug regimen and receive immediate feedback on potential interactions, and a continuing education module covering important aspects of drug-drug and drug-food interactions.

HIVInSite (hivinsite.ucsf.edu) -- this site includes information about drug-drug interactions, side effects, mechanisms, and precautions, organized according to type of therapy.

Johns Hopkins AIDS Service (www.hopkins-aids.edu/index_ask.html) -- Joel Gallant, MD, answers HIV/AIDS treatment-related questions. Past questions and answers are archived by subject area.

Project Inform (www.projinf.org/fs/drugin.html) -- this site includes an exhaustive list of drugs organized alphabetically, and a good discussion on how to approach managing the complex array of drugs used in HIV care. See also www.projinf.org/presentations/adherence for a slide show program covering various aspects of understanding adherence and strategies for success.

Internet E-mail Lists

Several electronic mailing lists offer support for people living with HIV/AIDS and their caregivers. These are especially useful for people who have e-mail-only access or who have a slow connection to the Internet.

Sci.med.aids -- an Internet discussion list and newsgroup which is the most active of all such resources. Anyone can post questions and read incoming messages. Many leading researchers, clinicians, advocates, and service providers regularly read and post to this forum. To subscribe, send a message to majordomo@wubios.wustl.edu; the text of the message should be: subscribe aids <your e-mail address>.

Crix-List -- a discussion list for people who are currently taking, anticipate taking, or are interested in protease inhibitor treatment for HIV/AIDS. The list started as a discussion specifically about indinavir (Crixivan), but recent discussions have included all the protease inhibitors and combination therapies. The list is not associated with Merck and Company, the manufacturer of indinavir. To subscribe or obtain information about the list, visit the web site crix.pinkpage.com, or send e-mail to crix-list@pinkpage.com with the word "subscribe" in the subject line of the message.

Gaypoz -- a discussion list for HIV positive gay men to share emotional support, medical information, and everyday life experiences living with HIV/AIDS. This is a closed list for HIV positive gay men only, and all subscribers must be approved by the list maintainer. For an automated response providing subscription information and list policies, send e-mail to lists@web-depot.com; the text of the message should be: info gaypoz.

HIV-support -- a more general, inclusive HIV support list for sharing emotional support and medical information among people with HIV/AIDS. The list is focused primarily on treatment and psychosocial issues. The list is for people with HIV/AIDS and their proxies (a person subscribed because the indivdual with HIV does not have the necessary computer access). For an automated response providing subscription information and list policies, send e-mail to lists@web-depot.com; the text of the message should be: info hiv-support. There are HIV support lists in languages other than English as well. For Spanish, the text of the message should be: info gentepoz; for Italian: info positivo.

HIV-docs -- a discussion list for physicians and other clinicians involved in treating people with HIV/AIDS. The purpose of the list is to foster the exchange of information among HIV-treating clinicians and researchers. This is a closed list and all subscribers must be approved by the list maintainer. For an automated response providing subscription information and list policies, send e-mail to lists@web-depot.com; the text of the message should be: info hiv-docs.

Integrative Medicine

The Osher Center for Integrative Medicine. University of California at San Francisco. Box 1726, San Francisco, CA 94143-1726. Phone: 415-502-0285; e-mail: ocim@cim.ucsf.edu.

Page last updated 15 January 1999

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