AIDS PATIENT CARE and STDs Volume 14, Number 3, 2000 Mary Ann Liebert, Inc.

Barriers to and Facilitators of HIV-Positive Patients Adherence to Antiretroviral Treatment Regimens

KATHLEEN JOHNSTON ROBERTS, Ph.D.

ABSTRACT HIV-positive patients must strictly adhere to antiretroviral regimens for the medications to work properly. Little, however, is known about the obstacles that patients face in adhering to the regimens or what, if anything, helps patients to adhere. The goals of the project were to describe, from HIV-positive patients own perspectives, the barriers they face in adhering to antiretroviral regimens and the strategies they use to maximize their adherence. Five main barriers (forgetfulness, social/physical environment, complexity of the regimens, medication side effects, and inadequate patient knowledge) to adherence and six main facilitators (mechanical devices, making a commitment, routinizing, health beliefs, social support, and professional support) emerged from the data. Patients may overcome some of these barriers by receiving better health education about the need for adherence, professional and lay support for their efforts, and mechanical devices such as alarm clocks and medi-sets. Other barriers, however, such as the complexity of the medications, highlight the need for simplified antiretroviral regimens.

have been made recently in the medical war against AIDS. Antiretroviral drug cocktails, which include protease inhibitors and other anti-HIV drugs, have been found to reduce the amount of virus in many patients blood to undetectable levels. 1 While researchers and clinicians do not use the word cure to describe the latest treatment regimens, it is clear that the regimens help many individuals live longer and healthier lives.24 Despite the cautious optimism associated with the antiretroviral cocktails, the medications have a darker side. Regimens are extremely complicated, with strict rules regarding when patients must take the drugs (e.g., time of day, with or without food) and how to
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store the drugs (e.g., in refrigerator or not).3,57 Moreover, the regimens can be very demanding with patients being required to swallow numerous pills each day. 7 The regimens also tend to produce a host of side effects for patients ranging from mild symptoms that may be tolerable (e.g., nausea) to severe symptoms that may be debilitating (e.g., kidney stones).5,8 If patients do not take antiretroviral medications essentially as prescribed, if doses are missed or taken improperly, resistance selection is expected, leading to clinical failure. 3,5 Moreover, resistant HIV may be transmitted.9 Hence, adherence to antiretroviral regimens is imperative, not only for the health of individual patients, but also for the health of the public as a whole.

University of California, Los Angeles.

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Despite the importance of HIV-positive patients adhering to cocktail antiretroviral regimens, and the difficulties associated with their doing so, there is a paucity of research regarding this topic. Most studies in this domain have focused on patients adherence to monotherapy, especially regimens of zidovudine (AZT). For example, Muma and colleagues 1 0 found that only 42.3% of a sample of 52 HIV-positive patients was adherent to their AZT regimen. Freeman and colleagues 11 also found high levels of nonadherence to AZT treatment regimens among injection-drug using HIV-positive individuals. Participants reported the following as reasons for missing doses: forgetting, wanting to hoard ones medication to either sell it or to minimize the number of visits to HIV clinics, being uncertain about how to take the medication, and insisting that a lower-thanprescribed dose was enough to hold them. Wall and colleagues 12 randomly assigned 27 patients on an AZT medication regimen to a supervised therapy group (i.e., patients were dispensed their medications by health care professionals) or a usual care group (i.e., patients were responsible for taking their medication themselves). Results showed that those in the supervised therapy group had better adherence, as measured by laboratory tests, than those in the usual care group. A recent study assessed the adherence patterns of 244 HIV-positive patients, most of whom were on monotherapy.13 Results showed that 60% of the patients had taken at least 80% of their doses of antiretroviral medication in the past 7 days. Barriers to adherence include patients having to take medication more than twice a day, being unable or unwilling to take medication when not at home, and believing that they could not adhere to therapy. Only one study to date has assessed the barriers that patients face in adhering to cocktail antiretroviral regimens. Chesneys 14 pilot study showed that 12% of patients in one clinical trial had missed one dose of medication in the preceding day, and 11% had missed a dose the day before that. Of those patients who admitted missing a dose, 40% said that they had simply forgotten, 37% had slept through the dose, 34% were away from home, 27% had

changed their therapy routine, 22% were busy, 13% were sick, 10% were experiencing side effects, and 9% were depressed. The studies to date suggest that many HIVpositive patients have difficulty adhering to antiretroviral medications. More data, however, are needed to better understand the complexities of adherence to cocktail regimens and to design interventions that may be useful in improving patients adherence. The goals of this project were to describe, from HIV-positive patients own perspectives, the barriers they face in adhering to antiretroviral regimens as well as the strategies they use to maximize their adherence.

METHODS In-depth, face-to-face interviews were conducted with 28 HIV-positive patients. Interviews lasted approximately 60 min and were audiotaped. All patients were asked about what, if anything, is difficult about taking antiretroviral medications, and what, if anything, helps them take their medications as directed. The interview questions were open-ended and the content, as well as the flow of conversation, changed with each subject, to match what the interviewee knew and felt.15 Written informed consent was obtained prior to the start of each interview . Each participant was paid $20.00 in cash for his/her time and for the transportation costs associated with traveling to the interview site. Fieldnotes were written at the conclusion of each interview and all tapes were transcribed. Samplerecruitment and composition Participants were recruited from the University of California, San Francisco AIDS Program of San Francisco General Hospital (SFGH). This well-regarded, urban, public health clinic serves primarily low-income individuals from diverse racial/ethnic backgrounds. Recruitment occurred between June 1997 and January 1998. Participants were recruited through flyers handed out and posted on bulletin boards in the waiting room. To be eligible for participation, patients had to be 18 years of age, be able to speak English, and have a primary care

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physician. Also, only persons who self-reported that they were HIV positive and had been taking an antiretroviral cocktail regimen that included a protease inhibitor for at least 3 months were eligible to participate. Fifteen men and 13 women respondents were recruited. The average age of respondents was 40, although ages ranged from 19 to 54. About half (46%) of respondents were Caucasian, 36% were African-American, 14% were Hispanic, and 4% were of other racial/ethnic backgrounds. Over half (54%) of respondents had completed at least some college education while the rest had completed high school or less education. Forty-three percent of respondents earned less than $5000.00 per year, 39% earned between $5001.00 and $10,000.00 per year, 14% earned more than $10,001.00 per year, and 4% did not know their annual income. The majority (68%) of patients had MediCal insurance, 18% had both MediCal and MediCare, 4% had private health insurance, and 11% had no insurance. The year of HIV diagnosis for patients ranged from 1984 to 1996; the modal year of diagnosis was 1989 (N 5 5). Eleven percent of patients rated their health status as excellent, 54% as good, 32% as fair and 4% as poor. The majority (75%) of respondents had HIV viral loads under 5000 copies while 8% had counts between 5001 and 50,000 and only one subject had a count about 100,000. Three patients did not know their viral loads. Eighteen percent of patients had less than 100 T cells, 43% had 101250, 32% had 250500, and 8% had 501 or more T-cells. The three most common antiretroviral medication regimens for patient subjects were (1) 3TC, d4T, and Crixivan (29%); (2) AZT, 3TC, and Crixivan (14%); and (3) 3TC, d4T, and Viracept (11%). The remaining subjects reported taking various other regimens. The length of time patients had been taking their antiretroviral medication regimen ranged from 3 to 36 months, with the average length of time being 12 months. Analysis Following the suggestions of Strauss and Corbin,1 6 multiple readings of the transcripts

were performed to identify major ideas or themes that emerged from the participants descriptions of their situations. Important and frequently mentioned ideas were grouped into coding categories, for example, barriers related to participants social/physical environment and facilitators related to participants use of mechanical devices. Ethnograph (a software program for computer-based text search and retrieval) was used to help manage the data during the coding process. Adequacy and plausibility of data Informal respondent validation and peer review were employed to ensure the adequacy and plausibility of the data.17,18 First, throughout the interview s, the interviewer asked subjects if she was understanding what they were saying, thus providing respondents with the opportunity to correct any misunderstandings that may have arisen, and adding additional data to the project that were used to enrich the analyses and bolster the credibility of the findings. Also, the interviewer often checked information gleaned from one respondent with another (e.g., Some women have said they dont like to take their pills in public. What do you think about this?). Next, peer review was accomplished by having the method of analysis and results critiqued by two independent medical sociologists and one physician who cared for HIV-positive patients. None of these individuals expressed concerns about the accuracy of the findings.

RESULTS Barriers Five main types of obstacles prevented HIVpositive patients from taking their medications as prescribed: (1) forgetfulness, (2) social/ physical environment, (3) complexity of the regimens, (4) medication side effects, and (5) inadequate patient knowledge. Forgetfulness. Forgetfulness was the most commonly mentioned barrier to adherence to the regimens. Simply put, patients forget to take their medication as prescribed. Many pa-

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tients mentioned that forgetting occurred when they were busy with their daily routines. As patient (PT) 15 stated, I got so much other stuff going on, I really dont have time. I barely have time to take pills three times a day. Some patients were busy with paid work. Others did not currently work, but kept busy in other ways, such as spending time volunteering at various organizations, going to healthcare appointments, and spending time with friends. Busyness with daily life was an especially important barrier for those patients who were caregivers to others. For example, Pt22, a mother of four young children, stated: It [taking my antiretroviral medications] was really hard because, when you have kids, you get up in the morning, youre getting them to school, you give them breakfast, and you dont really have time to eat. And then, the moment you sit down and you try to find some peace of mind . . . the two year-old wakes up, so youve got to fix her breakfast. Then, after she eats, shes running around, and you want to get dressed and do something, and you totally forget [to take your pills]. Given that women in the United States are more likely than men to be responsible for child care, elder care, care of the ill, etc., it is not surprising that women respondents were more likely than men to mention caregiving as a factor that contributed to the business of their daily lives, and subsequent nonadherence to the antiretroviral regimens. Many patient respondents suggested that they often forgot to take doses that were not tied to parts of their daily schedules. For example, if a patient was supposed to take pills three times a day, often he/she was fairly good at remembering to take the morning and night doses, but an afternoon or evening dose was more difficult to remember because it was not as intimately tied to the daily routine. Pt03 nicely summarized this type of obstacle, Its just hard to remember . . . the 2:00 in the afternoon medication because, the others revolve around getting up, going to bed, or meal times. Numerous patients also mentioned that they were more apt to miss doses on days that dif-

fered in some way from their normal routines. For example, Pt07 stated that he missed doses on the weekend because all the shows on TV are different on the weekend, [Laughter] . . . plus, my lovers home on weekends, so were usually out, and you know, were out and about. The out-and-about obstacle was intimately tied to patients failure to carry medications with them when they left their homes. While many patients did this, as will be discussed below in the facilitators section, many did not, and ended up missing doses while being away from home. Pt20 stated, We went to Great America [an amusement park], that whole day, I justI forgot the medicine, and I just didnt take it that day. Social/physical environment. The social/physical environment in which patients took their antiretroviral medications was another important factor in patients adherence to the regimens. For some people, being in a public and/or unfamiliar environment was an obstacle to taking their antiretroviral medications. Such environments, for some respondents, were not considered safe places to take pills. Specifically, several of the women respondents stated that they did not carry their medications with them because they did not wish to be seen taking the pills in public. No men in this sample mentioned this problem. Because 90% of the population with HIV/AIDS in San Francisco is male, it may be that many men are simply more comfortable than women with their HIV status, including having to take anti-HIV drugs in front of others. This is probably particularly true for gay/bisexual men in the city who may know friends, lovers, and/or acquaintances who are living with HIV disease. HIV-positive women may not have such a community. In any case, women in this sample discussed the embarrassment and stigma associated with taking AIDS medications in public. Pt16 stated: Its really inconvenient . . . and its somewhat embarrassing, like I remember times where I was at some friends house and like on holiday, you know, Im over at a friends house, barbecuing and everything, and here I come, popping two Crixivan pills. [Laughter]. . . . And somebody

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asked, Well, what are you taking? Im like, My medication. And theyre like, Medication for what? And I was like, Ahh and I have to think of something to tell them because Im not going to tell them what its for. Telling people what medications they were taking was an implicit way for the women to disclose their HIV status. Some respondents believed that people would be able to infer their status simply by seeing them take their medications. As Pt24 stated: If Im on the bus, of if Im going somewhere, and my alarm goes off and its time to take some, its like, do I just take it out, and take some, or do I wait until Im in a private space somewhere? Sometimes it takes a while to get in that private space. People knowing Im taking. They say, Oh. Shes got AIDS. If women were not open about their HIV status, they often did not want pills being a signifier to those around them that they were HIVpositive. Hence, women often had to make up stories to account for their medication-taking behavior. One woman told her friends that her antiretroviral medications were actually birth control pills. Another woman told her children that her pills were for the itch or her breathing. In any case, not wanting others to know about ones antiretroviral medications often presented an obstacle to taking the pills as prescribed. Women would forego a dose rather than draw attention to themselves while in public, or else would delay taking a dose until they were in a safe place. Another barrier related to the social/physical environment was respondents lack of appropriate food. As noted before, some of the antiretroviral medications have strict requirements regarding food. Crixivan, for example, should be taken on an empty stomach, while Saquinavir should be taken with a fatty meal. Pt01 discussed his difficulty with getting the right types of foods to eat with his medications. He lived on very limited income and ate many of his meals at a nearby soup kitchen. Some days he did not feel like walking down the

block to the soup kitchen to eat. On such days, he would take his pills on an empty stomach, or else just eat whatever was handy around his house (a candy bar, crackers, etc.). This example shows how socioeconomic standing plays a role in patient adherence. While people of all classes have been found to have problems taking medications as prescribed, 19 some types of challenges are more prevalent among those of lower socioeconomic standing. An individual with more money than this man could simply buy the groceries necessary to take his medications as prescribed without having to worry about scrambling for a free meal each day. Regimen complexity. Patients faced many obstacles to taking their medications as prescribed that were related to the sheer complexity of the regimens, including taking medications at assigned times, with or without food, with enough water, and with or without other medications. Sometimes the magnitude of this complexity was simply too much for patients and they were unable to do what had been asked for them. For example, Pt21 disclosed: Mine say take one every four or fiveno, no, waitone of them say, take one every such and such hour, and one tell me to take one just between meals, but you know what I do? I dont do it like that. I just take them . . . I cant remember to take the AZT, take one every two hours and then the other one say take everyoh! I cant remember. Thats too much. So, I said, to make it easy on myself, what I do is take them all at one time. . . . Because . . . the right thing is to make sure that those pills are in your body . . . thats all. Even though this patient believed that she was doing the right thing, it is possible that her medication-taking behaviors may lead to viral resistance. The antiretroviral medications are very sensitivemany have to be taken at precise intervals to maintain constant levels in the blood. Some need to be taken with food to have any bio-activity. If patients ignore these rules, even if doing so simplifies their lives and

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makes them more likely to actually ingest the pills, they may be risking an outcome that could be potentially worse than not taking the pills at all. Many patients talked about the problem of having to take medications with or without food. For example, at the time of this interview , Pt11 was in the midst of switching antiretroviral medications because the routine he was on had quit working (i.e., his viral load had increased while he was on the regimen, possibly signifying the development of resistance). He speculated that the reason for this problem was his inability to eat the right foods while taking his medication. Pt30 provides an example of a situation where the patient understands what she should and should not eat with her antiretroviral medications, yet simply does not follow such food rules. She stated: They said that they [antiretroviral medications] dont work as good with food. Theres certain foods through that you can eat, nonfatty foods. But, I really dont care at 6:00 pm. Im so hungry around there, 4 to 6, I just eat whats in the refrigerator. Hence, the complexity of this patients regimenespecially the requirem ents regarding foodare simply too much, and nonadherence is the result. Medication side effects. Numerous patients discussed medication side effects as obstacles that prevented them from taking their medications as prescribed. Patients responded to medication side effects in different ways. For example, one patient tinkered a bit with his dosing in the hope of decreasing his side effects. Others stated that they had quit taking their medications all together because of the severity of side effects. As Pt3 stated: I started with a different drug than Crixivan that didnt work for me. It made me really nauseous. And, I remember I felt like a little kid, I just dont want to take medicine anymore. I want to throw the medicine out the window, and the hell with it. And, thats how I felt.

Some patients, when experiencing such problems, immediately told their physicians and either were able to switch safely to another regimen or were encouraged to wait out the side effects (i.e., put up with them until they eventually subsided). Pt10 told his physician about a medication side effect, yet was not happy with the outcome of the interaction: My last physician, basically when I had a problem, a reaction to a drug, which I had many at that time . . . would say, Stop taking the drug, see me at your next appointment. That next appointment wouldnt be for a month or two . . . so during that time, things would not be looking good, and at that time I went through the resistance problem. Other patients did not tell their physicians about medication side effects and instead took matters into their own hands, stopping the medications. Inadequate knowledge. The final type of barrier was patients inadequate knowledge regarding how to take their antiretroviral regimens. While this barrier was not as prevalent as those described above, that it appeared at all is significant. Some respondents were nonadherent because they did not know the proper way to take their pills. The extreme case of this is perhaps Pt29 who took drug holidays, days or weeks during which she stopped taking all antiretroviral medications because she believed that her body needed a rest from the pills. This practice is especially dangerous for patients, such as this one, who take protease inhibitors, as drug holidays give the virus ample time to mutate and become resistant to the medication. There were less extreme, yet still noteworthy, examples in the data of patient ignorance regarding the antiretroviral regimens. The following is an excerpt of the interview with Pt21 regarding what she did if she was out and about and forgot to take a medication dose: I: Other people have told me that they might be out and about and they just forget to take a dose.

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S: I do that. I: Tell me about that. S: When it happens, I say, Oh, shit. Like that, you know. But, so what I do is, I go home and go, Man, now I have to take six. I: So you double up for next time. S: I do double up. Antiretroviral medication guidelines do not recommend that patients take a double dose of an antiretroviral medication should they miss a dose. Yet, for some reason, this patient believed that this practice was not only acceptable, but helpful. When asked how she knew that doubling up was the thing to do, Pt21 stated that she just knew because it was common sense. Another patient believed that she had been given inadequate information about how to take her medications as prescribed, that is, on an empty stomach. She stated: I was on this . . . Crixivan study. . . . And to tell you the truth, they never did really tell you know important it was to not eat or to eat. Some medicines you eat and some you dont. And I was never told that. But, then I was reading literature, actually the literature told me. And the doctors dont tell you that its important but the literature will. Facilitators The barriers presented above show that HIVpositive patients faced many challenges in taking their antiretroviral medications as prescribed. How did patients manage some degree of adherence, despite such challenges? This section presents six main facilitators of adherence that emerged from the data: (1) mechanical devices, (2) making a commitment, (3) routinizing, (4) health beliefs, (5) social support, and (6) professional support. Mechanical devices. Patients used a variety of mechanical devices to help them adhere to their medication protocols. Such devices included medi-sets (pill cases that are divided into separate compartments to correspond to

days of the week and/or doses during the day), alarm clocks (free-standing and on watches), written notes (e.g., Kathleen, dont forget to take your 2:00 pm dose), and day planners (appointment calenders in which patients recorded the time for each dose during a day, week, or month). These devices served as external cues that reminded patients about their complex medication schedules, thereby relieving some of the burden of remembering the assorted rules and regulations associated with the regimens. It seemed that medi-sets, especially, were helpful to many patients. As Pt01 maintained: I have a thing now, its a little pill box, right? It hasyou put your medication in them? And, its just its really good, just to take them for that particular hour . . . theyre in separate little dishes, you know what Im saying? And they work real good. So, I could just reach in and grab and I dont have to take the pill bottle, theyre all ready. Several patients noted that their frequency of nonadherence changed significantly once they incorporated a medi-set into their routine. Patients who stored their medications in their original bottles were forced to open numerous pill bottles each day (a true challenge for those with weak arm muscles). Moreover, they had no good way to check to see if they had actually taken a dose of medication. This led to various medication mistakes, such as inadvertently taking double doses of medication or skipping a dose because the patient believed he/she had already taken it. In contrast, medisets eased the burden of patients having to open lots of bottles and remembering if they had actually taken a dose. Pt10 stated: When I started this pill-taking at an extreme like I am now, it was very hard to keep track of what pills to take when, and how many, and if you had taken them the last hour. So, when I got the pillbox, just out of a whim, and people still laugh at me for having one, I can see that there may be days, or times in the day and the evening where I wont want to take them.

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Like, late in the evening, when Im going to bed . . . Ill realize that, and Ill go okay, well, before I go to bed, lets take the pills. I go over, I open this little box, and out pops anywhere from 11 to 20 pills. And, I take the pills and its done with, as opposed to having to open four, five, seven different bottles at each time. Its just thats extraordinarily frustrating and I want to make sure that Im doing what I can. Pt10s comments are interesting for a couple of reasons. First, they highlight how a mechanical device that takes even a bit of the burden of taking a complex medication regimen off of the patient can facilitate a patients adherence. However, his remarks also suggest that there may be some stigma associated with using the medi-set. Pt10 stated that people laugh at me for having one. When probed a bit further, Pt10 discussed how, in his mind, and perhaps many peoples, having a medi-set signified that one is unable to remember something important. Pt10 said that he first got the idea of using a medi-set from recalling that his grandparents had used medi-sets during their old age. Hence, in his mind, medi-sets were for those who were elderly, forgetful, and possibly infirm. Pt10 was none of these things, yet he was living with a serious disease that required complex medications. He was strong enough to recognize the need for and helpfulness of the medi-set and to use it, despite the kidding about it he received from his peers. It may be that individuals who are more ambivalent about taking antiretroviral medications and/or more influenced by peer pressure would not be able to successfully incorporate a medi-set into their routines. Making a commitment. Some patients stated that they had a mindset (an orientation, or way of being in the world, which stemmed from an active, thoughtful, and informed decision to take antiretroviral medications), which facilitated their adherence to the antiretroviral regimens. Such patients did not begin the regimens until they had thought about and accepted the consequences of doing so: they were committed to taking their pills from day one.

Pt09 described this process as similar to being indoctrinated into the army, Its like a routine now. Its just something I know I gotta do . . . Its like a regimentation during the service . . . you got something you got to do for the rest of your life if you want to stay alive. In a similar fashion, Pt14 described his commitment to the regimens as a type of self-discipline: S: I am pretty much on track right now, like I said. I: What helps you stay on track? S: Commitment, thats all . . . Determination, yeah, to take it . . . Because self-discipline is very important in my way of being brought up. I mean if you have discipline, you know that you have an obligation to do something. Routinization. While making a commitment to take the antiretroviral pills each day was an important facilitator of adherence, routinizing the medication regimen was a way for patients to fulfill this commitment. Routinization refers to anything that the patients did to integrate the medication-taking behaviors into their daily routines. For example, some patients tied their morning doses to waking up while others took their pills with meals. Some patients integrated their medications so successfully into their schedules that they described taking their dosages as being automatic. As Pt22 stated, Its like a tape recorder now . . . whenever I pick up something to eat, I automatically . . . take my pills . . . Its like, in my head. Its like, after you eat, you wash your hands. Its automatic. Routinizing was easier for patients who had predictable daily schedules as compared with those who had less stable lives. A couple patients stated that because they were at home during the day, they had the time and space to concentrate on taking their pills. As Pt04 maintained, I dont . . . work and I stay home and I make the meals and cook, and I . . . have . . . a clock, and I look at the time. Whereas, if patients had jobs, or other activities that took them away from home during the day, they often had a more difficult time remembering to take their medications.

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An important aspect of the routinizing for many patients was carrying their medications with them when they were away from home. (Recall that for some patients, not doing this presented a significant obstacle to taking their medications as prescribed.) Interestingly, several patients actually carried their medications with them to the interview for this project, and took a couple minutes at the outset, or even during the middle, of the interview to swallow their pills. Some patients also combined a mechanical device with their medication carrying to double ensure that they would stay on their schedule while they were away from home. Pt03 stated, I always carry some extra anti-virals. I have some in my briefcase . . . I just get one of these home beeper boxes with the pills . . . I just make sure I . . . put some AZT and Crixivan in there and . . . set it . . . to go off at 2:00. Health beliefs. Some patients stated that they made great efforts to take the antiretroviral medication as directed because they believed that the pills were making a noticeable positive difference in their health status. As Pt12 explained. Even though Im having side effects . . . I am more active . . . seems like for some reason Im thinking better, like Im more alert . . . I feel more life. In a similar fashion, other patients talked about the antiretroviral medications giving them more energy. While there is no scientific evidence regarding this energy outcome of the antiretrovirals, it seemed to be an important factor in patients willingnes s to put up with the complex regimens. There is scientific evidence regarding the antiretroviral medications efficacy in reducing HIV-positive patients viral loads. Several patients mentioned that getting good laboratory results served as an incentive for them to continue taking their pills as prescribed. Pt23 described: The ones now that I take, even when I got my blood count last week, and my . . . Tcells went higher and my viral load was downthat motivated me. It motivates me to continue to be faithful two times a day.

Some patients were motivated to take their antiretroviral medications as prescribed because they believed that their lives literally depended on it. As Pt19 stated: S: Taking your medicine is like a job itself. You really have tofor 24 hours you have toyou wake up all through the night, and all through the day. I: Is that ever hard, to do that day after day? S: Yeah . . . I: How do you do it? S: Well I guess I want to live nowthe will to live. In a similar fashion, Pt26 said, I know its saving my life . . . Im too young to die. Related to the idea that the antiretroviral medications were keeping patients alive, some patients discussed the fear of getting sick or dying as a great motivator to stick with their regimens. Pt28 conveyed this message: I: What, if anything, helps you stay on schedule taking the medications as prescribed? S: Just the idea that if I dont that Im totally screwed . . . just really . . . this whole feeling of doom if I should ever go off medications . . . If I stop taking the meds, then . . . just . . . I would hate to think what would happen. For some patients, seeing friends and/or family members die of or get sick because of AIDS served as a powerful reminder to take their pills. Although they may not particularly like taking so many pills each day, and following all the rules and regulations regarding food and drink, they knew that they must do so to avoid (or at least postpone) the same fate that their loved ones had experienced. Pt16 explained: S: I hate the fact that I have to take it [antiretroviral medications]. Oh, I hate it. I hate it with a passion. I: But you do it all the same. S: Yeah, yeah. I: Why are you doing it?

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S: To keep myself healthy, cause Im really scared of getting sick and, you know, some of my friends are, and theyre at the state where theyre not going to be here much longer. . . . Theyve gotten really, really, really thin and theyre having health problems and stuff. So, it scares me. You known, when I see that, it drives me to keep taking it. Social support. Seeing friends and family members get sick and/or die of AIDS was a powerful adherence motivator for patients, yet loved ones did not have to be sick to exert an influence on patients. Rather, patients friends and family members often facilitated patients adherence in more direct ways: loved ones reminded patients to take their pills, refilled prescriptions for patients, cooked appropriate meals to take with their doses, etc. Some patients also had friends or family members who were taking the same, or similar, antiretroviral regimens. Pt02 stated: My . . . friend, R., is taking the same thing. . . . Hes good about it. He will get up in the morning, and he takes his medication. Watching him as hes taking his medication, it teaches me that R. is taking his medication on the right time. That will help me, that will progress me. That will put me in better mood of taking mine at the right time. Because every time in the morning, at night, in the morning, at night. Its always on the right time . . . and that learns me to take mine. In this way, Pt02 modeled his friends adherence behaviors, thereby improving his own adherence to the antiretroviral regimen. Sometimes HIV-positive friends and/or family members did more than serve as role models of adherence behaviors. Sometimes, such individuals actually supplied patients with pills. Pt08 revealed that she often borrowed antiretroviral medications from her friends. She explained: Sometimes its hard to remember to get your pills filled. . . . I usually get my pills, and if I dont get my pills, everybody I

knows on the same pills. So, I just call them and get some of theirs. . . . I went on a retreat once and only brought four Crixivan. I dont know what I was thinking. And then, everybody there had extra Crixivan, so, you know. The practice of borrowing antiretroviral medications from others is interesting because it illustrates how savvy patients can be in terms of adherence. Rather than skip doses, patients found ways to get access to the pills their bodies needed. Yet, this practice also illustrates that patients often take medicines in ways that drug manufacturers, scientists, and physicians do not intend. Few health care professionals would likely condone the practice of sharing medications. This practice could be problematic for several reasons. First, patients often are prescribed different strengths of a medication, depending on their body weights. Problems could occur if patients take pills with too much or too little prescribed medication. Next, the patient who lends his/her medication to someone else may be left with an inadequate supply of pills, thus leading to his/her nonadherence. Finally, a patient may inadvertently borrow the wrong type of pill. Nevertheless, under difficult circumstances, such as being away from home with no pills, it is not clear which is the bigger danger, not taking any pills at all, or risking taking the wrong type or amount of a prescribed medication. Loved ones did not have to be taking antiretroviral medications themselves to facilitate patients adherence. Pt09, whose wife is HIVnegative, talked about the numerous reminders he received about his pills each day, My old lady . . . she pretty much, she get on me. Well, she, you know, wake up in the morning, Take your pills? And afternoon, Take your pills? Evening, Take your pills? Likewise, Pt10 discussed the help he received from his roommate, I dont always remember. But, most of the times, J. would be there to say, Hey, take your pills. Professional support. While social support from lay people was often mentioned by respondents, several also acknowledged receiving professional support, which facilitated their

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medication-taking behaviors. Such support came in different formats: (1) verbal advice from health care professionals, (2) supervised antiretroviral dosing by health care professionals, (3) verbal/written information from pharmaceutical companies, and (4) verbal/ written information from community-based organizatio ns. Pt21 discussed how she was motivated to take her antiretroviral medications by her physician: I started getting all these pains and everything and I told [my doctor] and she told me it was because I wasnt taking my medication. She said, Youve got to take that medication. You know, I really wasnt taking it until she really sat me down. I told her, Well, see . . . sometimes I forget. Thats when she gave me a pep talk on the medication. She told me . . . how important it is for me to take the medication on time, when Im supposed to take it, every day. . . . She started telling me things like that, and it just clicked. She said, If it will help any, Ill give you this. And she went to her drawer and gave me a pillbox. And she told me how to work with that. And since she did that, I started using the box and its been a lot easier . . . from that day on, I started taking my pills, and never stopped. In this example, it is apparent that the physicians advice combined with the mechanical device, the medi-set, greatly enhanced Pt21s adherence to her antiretroviral regimen. Similarly, Pt03 told an interesting story about making an appointment with a pharmacist to go over his antiretroviral regimen, just to ensure that he was taking the medicines correctly. He explained: I made an appointment with the pharmacist . . . to sit down and talk about . . . what can I take with what, or what kind of foods I should not take. So, it was very good to have that input . . . [I] felt he would be the best one to know all about it. So, we sat down, and he looked [at my medication routine], and he thought it was real good.

The only thing was, he says the ice cream at night has to go. This patient had been in the routine of eating a bowl of ice cream before retiring to bed each night; however, his nighttime dose was supposed to be taken on an empty stomach. The pharmacist caught this medication mistake, and advised the patient about how to correct it. Some patients revealed that their adherence to the antiretroviral regimens had been greatly facilitated when they lived in an environment in which their medications were dispensed to them by health care professionals. For example, a couple patients discussed living in a drug treatment program, and one patient lived in an AIDS hospice in which nurses dispensed all medications to patients. As Pt11 stated: I live in C. H. Hospice. Its not really a hospice anymore; its for people that have AIDS. Theres a nurse that comes everyday that does my infusions and a nurse to fill the medi-sets and theres CNAs [certified nurse assistants] who actually hand out the medicines . . . . Its good because otherwise I would probably never remember to take my medicines. Some patients were motivated to adhere to their antiretroviral regimens after receiving help and support from pharmaceutical companies or community-based organizations. For instance, Pt08 stated that she learned the right way to take her antiretroviral pills from Project Inform. When she was first given a prescription for Crixivan, she left the physicians office without having a thorough understanding about how to take the medication: S: Basically, I had to learn how to take the pills from Project Inform. . . . I called Project Inform about every four hours for the first four or five days. And, I said, Am I allowed to eat because I feel awful and it says no antihistamines or whatever, and then I said, Oh, am I allowed to do this? And then I accidentally doubled my dose because I was really nervous and I says, Am I going to die? And, you know, so

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I called them up and asked these questions and they kept calling me back. I: So you called Project Inform. You didnt call your doctor about those questions? S: Well, you call your doctor and you get voicemail. You call Project Inform and you get somebody. This example shows that patients can be empowered by non-health-care sources of support to take their antiretroviral medications. However, it also brings to mind the fact that not all patients may be empowered enough themselves to seek out such support. Clearly, different patients have different faculties and what works best for one may not be best for another.

DISCUSSION This paper explored the barriers that HIVpositive patients faced in taking their antiretroviral medications as prescribed and the facilitators that helped them stay on their medication schedules. The findings clearly demonstrate how challenging it is for HIV-positive patients to adhere to antiretroviral regimens. Yet, some of the barriers to adherence that respondents faced, such as those related to inadequate knowledge about their regimens, can potentially be overcome via more and better health education regarding antiretroviral regimens. In fact, many patients were facilitated in their adherence after receiving knowledge and support regarding how to take their pills. Health care professionals can and should play an important role in educating patients about their medication regimens; however, it is important to point out that patients also have responsibilities here. Patients should disclose to their providers the truth about their medication taking behaviors, including if/when they experience medication side effects and if/when they do not understand how to take a medication. Providers should establish a safe environment to allow patients to do this. Providers should also ensure that patients have adequate information about their regimens, including referrals to sources of adherence infor-

mation and support such as that provided by community-based agencies, the toll-free lines of pharmaceutical companies, and various peer-led groups. Having a multitude of possible sources of information available to patients is important, as different patients may feel most comfortable using different sources. For example, some patients may not be empowered enough themselves to call a community-based HIV/AIDS agency such as Project Inform, or the toll-free numbers of drug companies to get information regarding their medications. Some individuals may not know that such sources of information exist, while others may be too scared or embarrassed to call for help; such patients may respond best to advice straight from their primary care provider. Other patients may tune in to advice from peers. Hence, the best medium for adherence messages/reminders may be the one that works best for each patient at each distinct point in time. While health education may be helpful in troubleshooting patients barriers to antiroviral adherence and bolstering their facilitators of adherence, it is also important to point out that there is only so much that patients (and health care professionals) can realistically be expected to do. Some of the barriers that patients face, such as the complexity of the regimens, are inherent in the antiretroviral medications themselves. It may make more sense to consider changing (simplifying) the medications rather than asking patients to continue changing themselves. Many pharmaceutical manufacturing companies recognize the need for (and potential profitability of) simpler antiretroviral medications and are in the process of creating new and/or modified medications to fit this need. For example, the United States Food and Drug Administration recently approved the drug Combivir, manufactured by Glaxo Wellcome.20 Combivir is one pill that combines the previously separate medications, AZT and 3TC. Another pharmaceutical company, Trimeris, Inc., is currently developing a new type of antiretroviral medication, a fusion inhibitor, called T-20. The company claim s that this drug can prevent HIV from attacking and infecting healthy cells. In a clinical trial of 78 HIV-posi-

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tive patients, T-20 reduced patients viral loads by over 90% without any nausea, fever, or rash side effects.21 This new medication may help some patients overcome barriers to adherence relating to unpleasant antiretroviral side effects. Most people would agree that the development of simpler, but still efficacious, antiretroviral medications is commendable. It is important to highlight, though, that such medications still must be taken as directed. In fact, the dangers of nonadherence may be greater for patients who take the simplified medications as compared with the more complex ones. According to Project Inform, the blood level of a drug used only twice a day may fall below the minimum needed to sustain full suppression of HIV. . . . The switch to fewer doses makes it even more critical that people strictly adhere to the schedule. 22 This suggests that while simpler antiretroviral medications would likely ease patients burdens, it would be foolhardy to pursue such changes at the expense of ensuring that patients fully understand how to take their medications, and are supported as much as possible in their efforts to comply. Antiretroviral regimens pose many challenges for HIV-positive patients, yet many patients are able to manage some degree of adherence by incorporating various facilitators into their routines. While the facilitators found here may not work for all patients, it may be useful for patients to at least learn about what helps other individuals living with the disease to adhere. Peer education and empowerment may be extremely useful in this regard. Additionally, it may be useful for other concrete changes to be made, such as distributing a medi-set and alarm clock to each HIV/AIDS patient with his/her first prescription of antiretroviral medication. Any such trick that improves adherence should be pursued as vigilant adherence to antiretroviral medications provides patients with the best chances in the war against AIDS. In conclusion, it is important to note that while the barriers and facilitators found here provide a rich understanding of the complexities of adherence for some HIV-positive patients, these findings should be considered pre-

liminary, not exhaustive. The results are based on a small sample of patients drawn from a premier HIV/AIDS care program in San Francisco. It is quite possible that other types of patients (e.g., homeless individuals, individuals who live in rural areas, individuals who are actively using street drugs) face different barriers and facilitators. Future studies should explore this possibility.

ACKNOWLEDGMENT This research was supported by funds from the Universitywide AIDS Research Program, University of California, grant No. D97-SF-001.

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Address reprint requests to: Kathleen Johnston Roberts, Ph.D. Postdoctoral Fellow and Assistant Adjunct Professor UCLA Department of Sociology 264 Haines Hall Box 951551 Los Angeles, CA 90095-1551 E-mail: kjrobert@ucla.edu

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