But optimal adherence is difficult for many HIV-infected patients, and they and their health care providers often struggle with this subject.4 In order to gain insight into how patients view adherence and how we as health care providers can help them to achieve better adherence, a recent Internet-based survey of people living with HIV asked participants how well they followed their prescribed antiretroviral regimens, whether any problems were contributing to nonadherence, and what adherence strategies they have found useful. This survey is one of the largest national surveys administered on this topic to date. By gaining a better understanding of our patients, we improve our ability to focus on their specific needs; after all, if our patients do not take their medications as prescribed, we cannot strive to win the battle against HIV. The following is an overview of the survey and its findings.
The survey was conducted online in June 2005 by Richard Day Research of Evanston, Illinois, and was underwritten by Bristol-Myers Squibb. To take part in the survey, the participants had to be HIV-positive and currently on ART.
The survey consisted of 52 questions, many of which had multiple subtopic areas. Many questions were framed in a multiple-choice format; some were open-ended with a write-in category. A number of questions asked the respondents to rank-order their answers. The survey was designed by Richard Day Research and edited by the author.
A total of 403 HIV-infected persons taking ART responded to the survey invitation over a four-day period (June 2-6, 2005).5 The average age was 45; ages ranged from 19 to more than 60 years old.5 Eighty-one percent of respondents were men; 75% were white, 12% were black or African American, and 7% were Hispanic or Latino.5 Twenty-eight percent were heterosexual; the rest described themselves as gay or bisexual (2% preferred not to answer the question).5 On average, survey participants had been diagnosed with HIV 11 years ago, had been on HIV treatment for eight years, and had switched treatment regimens four times.5 Only 16% were still taking the regimen that they had been initially prescribed.5 The main reasons for switching medications were side effects (the reason stated by 39% of respondents for their most recent switch) and ineffectiveness of the regimen (38%).5
In this survey, "complete adherence" was defined as taking all antiretroviral drugs on time at least 95% of the time. It was clear that participants had some misconceptions about what it means to be adherent, even though they had an average of eight years of experience taking antiretroviral drugs.5 While 85% reported they understood how to take their medications properly, only 69% reported "complete adherence."5 Fifty-five percent and 38%, respectively, reported it was "very easy" or "somewhat easy" to take all their medications every day at the correct time; 40% said doing so was "much easier" and 20% felt it was "a little easier" than they had expected, while only 12% felt it was more difficult.5 The vast majority (91%) felt confident they are able to take their medications when they are supposed to, and almost as many (87%) reported feeling both a strong commitment to taking their medications correctly and to following their health care provider's orders exactly as to when to take their medications and with what food restrictions (if any).5 Eighty-five percent said they understood "very well" the requirements of their medications, including what they were supposed to take, at what times, and whether to take their medications with food or on an empty stomach.5 Thirteen percent said they "somewhat" understood the requirements of their regimens.5
However, despite confidence in and commitment to staying adherent, a sizable minority of patients was not as successful as is required for optimal outcomes. As this survey defined adherence in terms of doses missed or taken late, the results showed only 48% of survey participants were considered adherent.5 Based solely on the number of doses missed during the past seven days, 69% were considered adherent (defined as taking 95% or more of all required doses), while 31% were not.5 Sixty-six percent said they were fully adherent in that they had not missed a single dose in the past week, while 17% reported missing a single dose and another 17% reported missing two or more doses within the past seven days.5 Fifty-five percent agreed or somewhat agreed it was acceptable to take their medications earlier or later than the prescribed dosing intervals if they had a busy or changing schedule.5 The following beliefs were elicited: 20% said they believed their health would be okay even if they do not take all pills when they are supposed to; 14% believed it is acceptable to miss a dose every few days; and 10% thought it was all right to miss a dose as long as they made up for it with an extra dose the next time a dose was scheduled to be taken.5
Study participants were taking an average of 13 pills each day, of which seven were antiretroviral drugs; 61% were on twice-daily dosing and 18% were on once-daily dosing.5 Compared to when they first began ART, almost half (43%) stated they have become more consistent in taking their antiretroviral drugs, while 10% have become less so and 18% said their adherence varies.5 The primary reason for becoming more adherent (cited by 33% in open-ended format) is that patients were taking regimens with better dosing schedules.5 Nineteen percent reported their adherence had improved once they got used to taking their medications and it became routine.5
Why is adherence still such a thorny issue? According to survey participants, the primary reason for becoming less adherent (cited by 29% in open-ended format) is due to being busy with work or life demands.5 More than one third (38%) reported that although they "strongly" or "somewhat agree" that they want to take their medications, they sometimes forget or fall asleep.5 Twenty-two percent said forgetting to carry their medications with them when they were away from home was a problem.5 Psychological and personal control issues are important barriers for some patients, who do not yet feel they are managing HIV as they continue to be challenged by side effects and by disruptions to their daily routines and eating habits. Consistently, one quarter to one third of respondents felt they are not yet controlling how HIV affects their lives: 33% reported they have had to tailor their lives to their HIV treatment regimen, 24% agreed that "HIV is controlling me, instead of me controlling it," and 37% said having to take antiretroviral drugs means having less freedom.5 Twenty-seven percent felt having to take antiretroviral drugs was embarrassing.5
While 87% felt a strong commitment to taking their antiretroviral drugs as prescribed, side effects (47%), feeling ill (21%), or being depressed (23%) were the most frequently cited reasons offered for why adherence can be difficult.5 Respondents reported that the following side effects had the greatest influence on adherence: fatigue (42%), diarrhea (40%), nausea (29%), problems with sleep (28%), depression (26%), and body shape changes (26%).5 In addition, 34% cited concerns about the long-term effects of antiretroviral drugs as a reason staying adherent to ART can sometimes be difficult.5 Although cited less often than side effects, other barriers to adherence included too many pills to take at one time (23%); difficulty coordinating medications with one's daily schedule, with a changing schedule, or with a job (19%); pills too large and hard to swallow (19%); or difficulties when medications need to be taken with food (19%).5 However, it is noteworthy that the frequency of dosing was cited as a major barrier by only 11%.5 In open-ended format, 46% of respondents cited "being too busy" and "forgetting" as the top reasons for having missed specific doses or having taken them late within the past seven days.5
The good news from this survey is that more patients are sticking to their regimens. Eighty-five percent believed taking their medications will have a positive effect on their health, and 66% reported that taking their antiretroviral drugs has improved their quality of life in a number of specific ways: feeling in control of HIV (62%), worrying less about having HIV (44%), feeling healthier (43%), possessing a sense of well-being (41%), and thinking about having HIV less often (32%).5 Fifty-seven percent of participants were focused on controlling their viral load as the most important reason they are adherent.5
Sixty-two percent have been able to work with their health care providers to tailor antiretroviral regimens that suit their lifestyle.5 Patients said taking personal responsibility for their own success was essential, and recommended strategies to keep dosing easy and pills accessible. Ninety-three percent declared they themselves had the strongest influence on their success with adherence; 22% cited the influence of their health care providers, and 20% relied on immediate family members and partners.5 The most effective adherence strategies were ranked and the ones most frequently cited were using a pill container (48%), keeping pills in an obvious place (42%), switching to simpler regimens with lower pill burdens (40%), linking dosing to specific aspects of their daily routines (37%), working with their provider to tailor a regimen that suits their daily schedule and lifestyle (20%), and switching to a regimen with more tolerable side effects (30%).5
The survey revealed that patients rely on health care providers for information about how to take their medications, and many feel they are being listened to and helped. The primary source for 74% of the survey participants for information about how to take their medications properly was their health care provider; no other source was rated as the primary source for such information by more than 6% of the respondents.5 This finding underscores the fact that the patient-provider relationship is as important in successfully managing HIV disease as it is for other lifelong chronic illnesses. Topics that were stressed by respondents' health care providers included the importance of taking medications according to schedule (61% discussed this with their health care provider "a lot," 28% did "somewhat"), expected side effects (52% "a lot," 33% "somewhat"), reviewing a dosing schedule in detail (45% "a lot," 37% "somewhat"), how to manage side effects (45% "a lot," 34% "somewhat"), and what to do if a dose is missed (43% "a lot," 34% "somewhat").5 Areas that were less well covered include strategies and tips to maintain adherence (34% discussed this with their health care provider "not very much" or "not at all"), and reasons why patients might sometimes miss a dose (42% "not very much" or "not at all").5
There are a number of benefits to complete adherence. Adherence may result in better HIV suppression and help limit the emergence of resistance. As this survey showed, other important benefits are the improved sense of control over HIV infection reported by 62% of respondents, less worry about having HIV (44%), feeling healthier (43%), and possessing a sense of well-being (41%).5
However, it is disappointing that nearly one quarter (22%) of the survey respondents did not believe their health care providers really understood how hard it is for them to take their antiretroviral drugs.5 Twenty-six percent said they had not been given a choice of antiretroviral regimens that would suit their lives best.5 According to the DHHS, health care providers can and should adjust regimens to suit a patient's lifestyle, and address other issues such as side effects.6 When this is done, the chance of adherence success has been found to increase.1
It is reassuring that this survey showed better overall adherence than has been estimated in the past for other chronic diseases, where it averaged about 50%.1 However, there is still much health care providers need to know in order to counsel their patients on how to successfully adhere to their HIV medications. Adherence is both the challenge of a lifetime and a challenge for a lifetime. To best support our patients and help them derive maximum benefit from therapy, we need to work together with our patients every step of the way. We must have candid, straightforward discussions about side effects and lifestyle/schedule issues that can affect adherence, and we must be attentive to our patients' concerns.
Judith Feinberg is Professor of Medicine at the University of Cincinnati.