Jiapac288805.qxd

State of HIV Treatment
State of HIV Treatment
Results of the International Association of Physicians
in AIDS Care Surveys of HIV-Positive Patients and HIV-Treating
Physicians in the United States
José M. Zuniga, MSPH, PhD
was made to determine whether patients sought care Background: There are few reports about physician and
from surveyed physicians. Thus, patient-respondents patient attitudes about antiretroviral therapy. Reports on
may be patients of the surveyed physicians, but given the physician perceptions of HIV-positive patients and patients’
large pools of HIV-positive patients and HIV-treating perceptions of their physicians are even scarcer. Methods:
physicians in the United States, it is likely that they The International Association of Physicians in AIDS Care
conducted surveys of HIV-treating physicians, and a sepa-
are not. This difference in the survey populations rate set of HIV-positive patients. Physicians completed an
must be kept in mind when comparing physician and online questionnaire. Patients completed a written ques-
tionnaire. Results: Physicians and patients agreed on several
No attempt was made to determine the statistical issues, including the priority of viral suppression when mak-
significance of any responses when compared with ing treatment decisions and the treatment-limiting impact of
side effects. However, they had diverging treatment goals in
mind and differing impressions of the type and incidence of
side effects. There were also sharp differences in physicians’
estimates of how well patients understand HIV disease and
its treatment. Conclusions: The differences revealed through
Physician-Respondents
these surveys underline the need to conduct a systematic
IAPAC surveyed 152 physicians treating at least 1 study of physician and patient attitudes about antiretroviral
patient with HIV infection weekly. Forty-seven per- therapy, as well as physician-patient communication.
cent of physicians treated 21 or more HIV-positivepatients weekly, 26% treated 11 to 20 patients weekly, Keywords:
ART; adherence; resistance, HIV; AIDS
17% treated 5 to 10 patients weekly, and only 10%treated 1 to 5 patients weekly.
Physician-respondents reported that a mean of 48% of their patients have HIV infection, and 25% said The International Association of Physicians in AIDS 80% to 100% of their patients are HIV-positive.
Care (IAPAC) conducted 2 national surveys in 2005 Physicians averaged 16 years of experience treating to determine and compare US physician and patient HIV-positive patients, and 48% reported having 16 or opinions on antiretroviral therapy (ART) and physician- Physicians were randomly selected from IAPAC’s Patient-Respondents
membership database and were surveyed via a 40- IAPAC surveyed 399 patients who had been infected item online questionnaire. Patients were randomly with HIV for a mean of 10.2 years (32% for 0 to 6 selected by AIDS service organizations in 13 cities years, 42% for 7 to 14 years, 27% for 15 to 27 years).
and surveyed via a 48-item written questionnaire.
Three hundred eighteen patients (80%) were on ART Richard Day Research of Evanston, Illinois, designed at the time of the survey, 42 (10%) had suspended the patient and physician surveys, oversaw data col-lection, and conducted an analysis of survey results.
From the International Association of Physicians in AIDS Care, Patient-respondents were not selected from the practice records of surveyed physicians, and no attempt The patient and physician surveys were conducted through fund-ing from Bristol-Myers Squibb. The author reports no financialinterests in Bristol-Myers Squibb.
DOI: 10.1177/1545109706288805 2006 Sage Publications Correspondence: José M. Zuniga, MSPH, PhD, 33 North LaSalle,
Please visit the Journal at http://jiapac.sagepub.com Suite 1700, Chicago, IL 60602; e-mail: [email protected].
J INT ASSOC PHYSICIANS AIDS CARE 5(2); 2006 pp. 51-56 ART, and 39 (10%) were ART-naïve. These differences it is reasonable to expect that HIV patients will live in proportions of treated and untreated patients a normally long life.” Reflecting that response, 60% must be kept in mind when comparing responses of agreed and 30% strongly agreed that “with current treatments, HIV is now a manageable disease.” Patients Physician reports of patient treatment experience proved slightly less optimistic about their expected reflected patient reports, as physicians estimated that longevity: 28% agreed strongly and 31% agreed that a mean of 79% of their patients were on ART.
they expected to live a normal lifespan.
Physicians determined that a mean of 59% of their Among physician-respondents, 45% cited side patients had an undetectable viral load. Patients were effects as their single “biggest concern” about ARV not asked to describe their viral load.
drugs, 28% cited the potential for resistance, and Patients had a mean age of 44.0 years, and only 7% cited cost. When multiple responses were allowed, 27% were under 39 years old. Seventy-two percent were 87% listed side effects among their concerns, 78% male, 89% had completed at least high school, and listed the potential for resistance, and 46% listed cost.
29% had a college degree. Only 26% of respondents Among patients off treatment, the largest propor- had a full-time job, whereas 12% had a part-time job, tion (31%) cited side effects as their single biggest and 6% described themselves as self-employed. The concern, whereas 15% cited taking ARV drugs as a other patients said they were not employed and not daily reminder of their HIV infection, and 10% cited looking for work (23%), not employed and looking the “hassle” of taking ARV drugs every day. Among for work (15%), retired (11%), a homemaker (4%), patients on treatment, 24% saw the threat of resis- tance as their biggest concern, whereas 17% saw ther-apy as a reminder of their HIV infection, and only Patient Quality of Life
15% saw side effects as their top concern. An encour- Although 60% of patients on treatment and 58% off aging 21% in each group listed “no concerns” when treatment said HIV affected their ability to work, only asked to name their biggest problem with ART.
28% of ART-naïve respondents made that claim.
Although 69% of physicians listed “keeping viral Nearly half of the respondents on or off treatment load as low as possible” as an “extremely important” goal said HIV affected their financial security, whereas of treatment, 51% called avoiding resistance extremely 33% of ART-naïve patients cited that worry.
important, 49% rated “keeping CD4 counts as high as Whereas 58% of all patient-respondents rated possible” extremely important, and 39% listed “avoid- their physical health as “good” or “excellent” (with little ing long-term side effects” as extremely important.
difference between on- or off-treatment groups), 45% A similar proportion of patients (68% on treatment of those on treatment and 43% of those off treatment and 64% off treatment) also called controlling viral versus 23% of those never treated said HIV “somewhat” load an “extremely important” goal of ART. But even or “very much” affected their ability to carry out activi- higher proportions, 70% on treatment and 74% off ties of daily living such as eating, bathing, and dressing.
treatment, listed “feeling healthy” as an extremely One third of all patient-respondents claimed HIV important goal. In contrast, 55% of physicians rated affected their emotional well-being “somewhat,” and keeping patients feeling healthy as an extremely another third felt their emotional well-being was important goal, though 43% called it “very important.” affected “very much,” regardless of treatment group.
A plurality of physicians (44%) felt 2 objectives of Although 31% of patients believed HIV affected their ART planning are equally important: “how treatment ability to sustain relationships with friends and family will affect the patient’s quality of life, even if it means members “somewhat,” about 20% felt that impact delaying treatment or achieving suboptimal clini- cal outcomes,” and “suppressing HIV, even though itmay negatively affect a patient’s quality of life.”Among physicians who gave equal importance to Treatment Objectives and Satisfaction
both goals, 55% leaned toward suppressing HIV as Most physicians and patients gave current antiretroviral more important and 33% leaned toward quality-of- (ARV) regimens high marks. A large majority of physi- cians claimed they are “somewhat” (65%) or “very”(14%) satisfied with current regimens. An even higherproportion of on-treatment patients (51%) reported Importance and
being “very satisfied” with their current regimen, Frequency of Side Effects
whereas 28% said they were “somewhat satisfied.” Patient-respondents generally agreed with physicians A majority of physicians either agreed (56%) or in their relative rating of the importance of side strongly agreed (16%) that “with current treatment, effects. Only 23% of those on treatment and 27% of J INT ASSOC PHYSICIANS AIDS CARE 5(2); 2006 State of HIV Treatment
Patient Ranking of Treatment Goals
Physician-Reported Common Side Effects in Their
On-Treatment Patients
Keeping viral load as low as possible (or undetectable) Side Effects Reported by On-Treatment Patients
Physician-Reported Reasons for Treatment Delay
Laboratory values do not mandate treatment Gastrointestinal problems (nausea, diarrhea, vomiting) Concern about long-term, unknown effects of treatment those off treatment agreed or strongly agreed that Patient reports of side effect frequency make an the side effects of ARV drugs are worse than HIV dis- interesting contrast with physician reports. In gen- ease itself. In contrast, 49% of those on treatment eral, physicians reported strikingly lower frequencies and 44% of those off treatment disagreed or strongly of common side effects than did patient-respondents disagreed with that statement. The rest neither agreed nor disagreed. Among physician-respondents, 76% Whereas large majorities of patients reported fatigue disagreed or strongly disagreed that ARV drug side (77%) or anxiety and depression (69%), physicians effects are worse than the disease itself, and another saw fatigue in only 26% of their patients and anxiety 20% neither agreed nor disagreed. Although 60% of patients on treatment and 64% of those off treatmentrated “looking healthy” as an extremely importantgoal of ART, only 14% of physicians rated that goal Starting and Switching ARV Regimens
extremely important. Among patients, 25% called A large majority of physician-respondents follow “looking healthy” a very important goal of ART, the US Department of Health and Human Services whereas 53% of physicians gave “looking healthy” a Guidelines for the Use of Antiretroviral Agents in HIV- 1-Infected Adults and Adolescents1 (DHHS Guidelines) One clear finding on patient attitudes about either “somewhat” (43%) or “very closely” (44%) when goals of ART is that most HIV-positive patients believe prescribing ARV regimens. Physicians report that, all the suggested goals are “extremely important,” but on average, 15% of their patients are reluctant to “feeling healthy” emerged as the most important over- start ART, even after a discussion about the goals of therapy. When seeing a new patient, physician- Despite patients’ relatively low ranking of the respondents delay initiating ART in 39%. Table 4 out- importance of avoiding side effects, compared with lines the multiple primary reasons physicians delay other goals of ART, most on-treatment patients sur- veyed suffered from problems that may be caused by Although 68% of physicians favor nonnucleoside ARV drug-related side effects (Table 2).
reverse transcriptase inhibitor (NNRTI)-based ARV J INT ASSOC PHYSICIANS AIDS CARE 5(2); 2006 regimens, 28% prefer a protease inhibitor (PI)-based Physicians believed that 16% of their patients take regimen. Reflecting recent clinical trial results and drug holidays because of ARV drug-related side DHHS Guidelines revisions,1,2 only 2% of physician- effects. Only 1% of physicians reported trying struc- respondents report preferring a triple-nucleoside tured treatment interruptions “very often,” and only reverse transcriptase inhibitor (NRTI) regimen.
20% do so “occasionally,” results reflecting generally The primary reasons physician-respondents switch negative findings on treatment interruptions in sev- ARV regimens include side effects (41% often, 7% all eral clinical trials.3-9 Patients were not surveyed about the time), number of pills (23% often, 3% all the time), and dosing frequency (16% often, 3% all thetime). Only 4% of physicians say they switch ARV reg- Physician-Patient Relations
imens because of cost. Physicians switch a mean of Physician- and patient-respondents had different per- 5% of their patients weekly from one regimen to ceptions of their relations with each other. An equiv- another “specifically because of side effects.” alent proportion of physicians said they make most Among on-treatment patients, 47% say they have decisions about their patients’ treatment (47%) or asked their physician to switch ARV drugs because of that they make decisions with patients in “an equal side effects, 19% because the dosing frequency did partnership” (44%). The other 9% reported that “the not fit their schedule, 15% because they found it dif- patient makes most decisions, consulting with me for ficult to keep track of the number of pills they were required to take, and 10% because of cost.
On the other hand, a majority of both on-treatment In a surprising response, 16 of 40 off-treatment patients (65%) and off-treatment patients (56%) said patients (40%) said they never switched from one they make treatment decisions in an equal partnership ARV regimen to another. The survey did not reveal with their physicians, whereas 27% of on-treatment why these patients suspended ART without trying a patients and 29% of off-treatment patients said their physicians make most treatment decisions. The A majority of on-treatment patients (93%) remaining 8% of on-treatment patients and 12% of reported knowing which ARV drugs they are taking, off-treatment patients reported they made most deci- but only 54% knew which classes of ARV drugs sions in consultation with their physicians.
they were taking. On-treatment patients reported a Patients and physicians also differed in how often different NNRTI-PI balance than did physician- they reported physician discussion of treatment objec- respondents: 72% said they are taking a PI and 34% tives and tradeoffs. Almost all physician-respondents said they are taking an NNRTI. Only 7% reported tak- (87%) stated they have such discussions “very often” ing an entry inhibitor. That only 56% of on-treatment (45%) or “all the time” (42%). But only 24% of all patients said they are taking an NRTI confirms that patients reported that physicians had such discussions patients do not understand which drug classes they “very often” and only 26% “always.” This discrepancy may reflect differing perceptions by physicians andpatients, or it may indicate that few patient-respondents Adherence and Drug Holidays
are treated by the physicians who were queried for Defining adherence as taking medications on aver- age 93% of the time, physician-respondents believed Sixty percent of physicians felt they usually have 71% of their patients adhere to their ARV regimen.
enough time for patients’ questions and concerns Among on-treatment patients, 84% considered them- about side effects and HIV treatment options, whereas selves good adherers. But that estimation does not 12% said they always have enough time to do so. On- mirror patient reports of how often they took all their treatment patients gave their physicians even higher doses in the past 7 days: Only 76% of on-treatment marks on this question, with 28% saying physicians patients had perfect adherence by that criterion, usually have time to answer such questions and 57% though another 10% took all their doses in 6 of the saying physicians always do. But off-treatment patients past 7 days. Among off-treatment patients, only 55% reported somewhat less interaction with their physi- considered themselves good adherers while taking cians on questions related to side effects and treat- ARV drugs, a low proportion perhaps reflecting fre- ment options, with 37% saying physicians often had quent side effects or other problems.
time and 34% saying they always had time.
The top 3 factors physicians weigh when considering Physicians and patients disagreed on how often they a patient’s potential for adherence are recreational drug discuss diet, physical activity, and smoking. Whereas or alcohol use (80%), presence or absence of a social 59% of physicians said they discuss those issues “often” support network (78%), and housing situation (51%).
and 19% “all the time,” only 32% of patients reported J INT ASSOC PHYSICIANS AIDS CARE 5(2); 2006 State of HIV Treatment
physician counseling on these topics “very often” and ARV regimens. But opinions diverged when physicians 21% “always.” Physician- and patient-respondents also and patients were asked whether currently available disagreed on how often they discuss safer sex. Among ART ensured a normal lifespan: Whereas 72% of physicians, 51% said they discuss safer sex “often,” physicians agreed or strongly agreed with that propo- and 22% said they discuss safer sex “all the time.” But only 15% of patients said their physicians discussed Two thirds of physicians and patients strongly safer sex “very often” and 25% “always.” agreed on the high priority of controlling viral load.
About two thirds of patients also felt that maintaining Patient Understanding
a high CD4 count and avoiding resistance rated as of HIV Disease and Its Treatment
high priorities, whereas 69% ranked “feeling healthy” A high proportion of physician-respondents gave a high priority. Patient-respondents clearly took a patients low ratings on their understanding of HIV broad view of the goals of ART. In contrast, lower pro- disease and its treatment. A substantial 24% said portions of physicians gave the highest priority ranking “almost none” of their patients “typically understand to keeping patients feeling healthy (55%), avoiding what you tell them about HIV, treatments, and side resistance (51%), keeping CD4 counts high (49%), effects,” whereas 49% reported that fewer than half and avoiding long-term side effects (39%).
had such understanding and another 22% said “about Physicians and patients also expressed somewhat half” understood what they were told about HIV. In divergent views on the impact of ARV drug-related sum, 95% of physicians believed half or fewer of their side effects. For example, 76% of physicians disagreed patients “typically understand” what physicians tell or strongly disagreed with the statement that treat- them about HIV disease and its treatment.
ment side effects are worse than HIV infection itself, Patient-respondents had a vastly different sense of whereas only 49% of patients on treatment and 43% how well they understand what their physicians say of patients off treatment disagreed or strongly dis- about HIV: 66% reported they “almost always” under- stand, and 20% reported they understand more than Compared with off-treatment patients, the greater half the time. Furthermore, 26% of patients considered concern of on-treatment patients is resistance, sug- themselves “extremely well informed” about HIV, and gesting that treatment failure, not toxicity, is their 38% self-rated as “very well informed.” biggest worry. The on-treatment patients’ concern In seeming contradiction with physicians’ estimates about side effects, which is lower than that of the off- of how well patients understand what physicians tell treatment group, suggests they have experienced them about HIV, physicians, on average, rated 49% of fewer adverse reactions than the off-treatment group their patients “very well informed” about HIV. When has experienced, and that difference may partly asked the one area in which their patients are best explain why these patients remain on treatment.
informed, most physicians selected adherence (51%) Patients and physicians differed on the importance or side effects (31%). Nearly two thirds of physicians of “looking healthy” as an “extremely important” treat- (65%) ranked resistance as the area about which their ment goal (60% of patients and 14% of physicians).
Whereas 25% of patients called “looking healthy” a Most physician-respondents (60%) thought more “very important goal,” 53% of physicians ranked “look- than half of their patients had “unrealistic expecta- ing healthy” as very important. There may be only a tions about HIV treatment,” and another 15% fine distinction between what is “extremely important” thought “almost all” had unrealistic expectations.
and what is “very important,” but these differences sug- Most patients reported that their physicians did gest that patients are more concerned about how ARV “extremely well” (43%) or “very well” (31%) in inform- drugs will affect their looks than are their physicians.
ing them about ART. Asked to list their top 3 sources The high proportions of patients reporting sleep of information about ART, patients listed their physi- disturbances (73%) and dizziness (49%) suggest that cians (83%), magazines (41%), their physician’s sup- many respondents were taking efavirenz (EFV), port staff (36%), and Web sites (35%).
although 72% of patients reported taking a PI-basedregimen and only 34% reported taking an NNRTI-based regimen. If most patient-respondents were Discussion
not taking EFV, the high proportions reporting sleep Survey respondents, both physicians and patients, disturbances and dizziness indicate that 2 problems expressed general satisfaction with current ARV regi- commonly attributed to EFV often arise for other mens. The same proportion from each group, 79%, reasons. Yet on-treatment patients report that only claimed to be somewhat or very satisfied with today’s 56% of them are taking an NRTI, suggesting some J INT ASSOC PHYSICIANS AIDS CARE 5(2); 2006 patients do not understand which ARV drugs fall in Nevertheless, several results suggest that physicians and patients have different expectations of ART, diverg- The survey revealed a great difference in propor- ing treatment goals in mind, differing impressions of tions of patients reporting fatigue (77%) or anxiety the importance of side effects, and sharp differences or depression (69%) and physicians reporting those in their estimates of how well patients understand what problems in patients (26% and 23%, respectively).
they are told about HIV disease and its treatment.
These stark differences between physician and patient These important differences, and lack of research in responses mean that patient-respondents were not this area, underline the need to conduct a systematic under the care of physician-respondents, that patients feel more side effects and other problems than theyreport to physicians, or that physicians do not under- References
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1 objective side effect, elevated lipid levels, the dif- October 6, 2005. Rockville, Md: Department of Health andHuman Services; 2005.
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are likely not cared for by the physicians who were Kaufmann DE, Lichterfeld M, Altfeld M, et al. Limited dura- surveyed. Also, selection bias may have affected patient bility of viral control following treated acute HIV infection.
results on these questions, if one assumes that more knowledgeable patients may be more likely to agree Hoen B, Fournier I, Lacabaratz C, et al. Structured treatmentinterruptions in primary HIV-1 infection: the ANRS 100 to be surveyed. But even if one takes these possibili- PRIMSTOP trial. J Acquir Immune Defic Syndr. 2005;40:307-316.
ties into account, the nearly diametrically opposed Lawrence J, Mayers DL, Hullsiek KH, et al. Structured treat- ratings of how well patients understand HIV disease ment interruption in patients with multidrug-resistant human and its treatment suggest some failures in the physician- immunodeficiency virus. N Engl J Med. 2003;349:837-846.
Ruiz L, Ribera E, Bonjoch A, et al. Role of structured treat-ment interruption before a 5-drug salvage antiretroviral regi- This study has certain limitations. It did not attempt men: the Retrogene Study. J Infect Dis. 2003;188:977-985.
to create a nationally representative sample when Ghosn J, Wirden M, Ktorza N, et al. No benefit of a structured randomly selecting either physicians or patients to treatment interruption based on genotypic resistance in survey. It did not attempt to select patients cared for heavily pretreated HIV-infected patients. AIDS. 2005;19: by physician-respondents. And it did not attempt to El-Sadr W, Neaton J. Episodic CD4-guided use of antiretroviral balance proportions of patients who were on treat- therapy is inferior to continuous therapy: results of the SMART ment, off treatment, and treatment-naïve. Because study. In: Program and abstracts of the 13th Conference on of these limitations, any attempt at statistical compar- Retroviruses and Opportunistic Infections. February 5-8, 2006.
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