AIDS PATIENT CARE and STDs Volume 16, Number 1, 2002 Mary Ann Liebert, Inc.

Physician-Patient Relationships, Patient Satisfaction, and Antiretroviral Medication Adherence Among HIV-Infected Adults Attending a Public Health Clinic
KATHLEEN JOHNSTON ROBERTS, Ph.D.

ABSTRACT The goal of this project was to explore the connections between human immunodeficiency virus (HIV)-positive patients adherence to antiretroviral medication treatment regimens and their beliefs about and satisfaction with their primary care physicians. In-depth interviews were conducted with 28 HIV-positive patients. Results showed that most patients were extremely satisfied with their current primary care physicians. When patients were dissatisfied with their care, it was often because there was a mismatch between the patients expectations of care and the physicians consultation style. Results also showed that good quality physician-patient relationships tended to promote adherence while lesser quality relationships impeded it. Findings suggest that strengthening and promoting the bonds between physicians and HIV/acquired immunodeficiency syndrome (AIDS) patients should be an absolute priority, at both the interpersonal level of physician-patient interactions but also at the organizational level. INTRODUCTION mens, it is clear that the regimens help many individuals live longer and healthier lives.24 However, current antiretroviral regimens are complex, with numerous proscriptions regarding the timing of doses as well as patients intake of food and water. 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.2,5 Moreover, resistant HIV may be transmitted.6 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. Decades of social and behavioral research suggest that physician-patient relationship

during the late 1990s have changed the landscape of human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) care quite dramatically. While an HIV diagnosis used to be considered a virtual death sentence, HIV/AIDS is now considered to be much more of a chronic, manageable disease. Antiretroviral drug cocktails, while 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 regiEDICAL ADVANCES

Department of Sociology, University of California, Los Angeles, Los Angeles, California.

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variables are closely associated with patient adherence. As summarized by OBrien, et al.7 patient satisfaction, communication, and consultation style are all factors in the doctorpatient relationship that directly affect patient adherence. 7 Patients who are dissatisfied with the their medical care are less likely than other patients to comply to treatment recommendations.810 If patients do not feel in control of their illnesses and left out of treatment decision-making, nonadherence is likely to occur.11,12 In contrast, a collaborative relationship between physician and patient, one in which patients play an active role in treatment decisionmaking, is positively related to both patient satisfaction and adherence.10,1315 The greater a patients sense of control over the disease, the more likely he/she is to adhere to treatment recommendations. 16 Studies suggest that HIV/AIDS patients levels of satisfaction with their physicians are generally high.17,18 For example, Kochen and colleagues17 assessed levels of provider satisfaction among patients with HIV/AIDS in Germany. Results showed that 84% of 394 patients were satisfied with their general practitioners. Factors related to both the physician and the patient can influence HIV-positive patients levels of satisfaction with their health care.19,20 Sullivan and colleagues20 found that HIV-positive patients who perceived their primary care physicians to be empathetic and knowledgeable with respect to HIV were more likely than other patients to be satisfied with their medical care. Katz and colleagues 19 found that HIVpositive men who had fee-for-service insurance were more satisfied with the interpersonal relations with their physicians compared with men who had managed care. No studies to date have explored the potential links between HIV/AIDS patients satisfaction with their physicians and their beliefs about and practices of adherence to antiretroviral treatment regimens. This is surprising given the necessity of patient adherence to antiretroviral medications and the link between patient satisfaction and adherence. This study helps to fill this gap in the literature by exploring the connections between HIV-positive patients adherence to antiretroviral medica-

tion treatment regimens and their beliefs about and satisfaction with their primary care physicians.

METHODS In-depth, face-to-face interviews were conducted with 28 HIV-positive patients. Interviews lasted approximately 60 minutes 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 openended and the content, as well as the flow of conversation, changed with each subject, to match what the interviewee knew and felt.21 Written informed consent was obtained prior to the start of each interview. Each participant was paid $20.00 in cash for their 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. Sample recruitment 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 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. Analysis Following the suggestions of Strauss and Corbin, 22 multiple readings of the transcripts were performed to identify major ideas or themes that emerged from the participants de-

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scriptions of their situations. Important and frequently mentioned ideas were grouped into coding categories and 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.23,24 First, throughout the interviews, 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. 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. All of these individuals were satisfied with the accuracy of the findings.

agnosis 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 5,000 copies while 8% had counts between 5,001 and 50,000, and only one subject had a count above 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 indinavir (29%), (2) AZT, 3TC, and indinavir (14%), and (3) 3TC, d4T, and nelfinavir (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. I love my doctor Most patients were extremely satisfied with their primary care physicians. Many patients could find absolutely nothing negative to say regarding their relationships with their doctors. Rather, patients used a variety of flattering adjectives to describe their providers, including excellent, good, compassionate, caring, knowledgeable, and wonderful. The only nonflattering adjective that some patients used to describe their physicians was busy. Given the state of health care today, and the widespread dissatisfaction that many patients have with health care, this type of adoration is exceptional. Moreover, that the adoration occurs at a busy clinic located at a public health, urban hospital that serves primarily low-income, minority patients makes the situation all the more notable. Many patient respondents talked about loving their physician, and considering their physician to be a friend. As patient 6 stated, We have a close bond and shes great. I love my doctor. Oh, man, shes justshes very down-to-earth and caring and sensitive and you can talk to her basically about anything. Likewise, patient 20 stated, Hes just there for

RESULTS Sample demographics 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. More than 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 $5,000.00 per year, 39% earned between $5,001.00 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 di-

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me. I like him a lot . . . I think it was a meeting of the minds . . . I think . . . we really became patient and doctor, as well as friends. Regarding this friendship component of many physician-patient relationships, some patients stated that they had done activities with their physician that were outside the scope of a typical physician-patient relationship, such as attending a basketball game, getting a ride home from the clinic, or exchanging gifts during the holidays. It may be that patients high levels of satisfaction with their physicians are because of a physician halo effect. That is, given that SFGH is one of the premier AIDS clinics in the world, perhaps the physicians who work there are more motivated and interested in caring for HIV/AIDS patients than are physicians who practice elsewhere. This devotion may have contributed to the overall good quality of the physician-patient relationships found at the clinic. Friend or mechanic? It is important to note, however, that there was a range of variation regarding the types of relationships patients established with their physicians. As noted above, some patients considered their physician to be their friend. They talked to their doctor about all aspects of their livestheir emotions, their living situations, and their medications. For example, patient 22 stated:
I have . . . one of the best doctors there is in San Francisco. . . . Hes like the greatest and I love him. He has this great sense of humor, you know? And he keeps me smiling and he keeps my hopes up. . . . He never rushes me out. . . . He always takes the time. We can sit there and he wants to know how Im doing. Not just with the medications, not just with AIDS, but personal. With my family, whats going on around me.

the way he operates. Hes professional. Patient 15 also had a more professional relationship with his physician. He made an analogy between his AIDS physician and a mechanic:
Subject: Its kind of like a real professional kind of relationship . . . I mean, its like having a car, you know? You get it around 60 or something, it starts jiggling or something like that, whatever. Its a really cool car. You want to keep it, but youre not sure whats wrong with it. So, you take it to somebody who really knows cars. Now, he can sit there and look at it, say Well, it looks fine to me. . . . [Or, he] fixes it, says It was this, and dont run over potholes anymore. . . . Interviewer: Mmm hmm. And so, your doctor is kind of an expert of AIDS Subject: Yeah. Kind of like that and on me. On my body . . . how my body works.

Hence, this patient considered his physician to be a competent professional who knew bodies just as mechanics knew cars. This patient was not interested in being friends with his physician; rather, he wanted a professional who knew how to fix problems as they arose with his HIV disease. Physician as anchor Regardless of the particular type of relationship respondents had developed with their own providers, many individuals maintained that good physician-patient relationships were particularly important for HIV/AIDS patients. As patient 10 stated, The [HIV/AIDS] patient is in an unusual world, a very strange place that has very few windows. And, one of the windows that they do have would be the physician. Likewise, patient 16 stated:
Having a relationship with my doctor Its very important because it gives me a sense of closeness, you know, and a connection, where I can feel as though I can talk to her about anything thats going on with me, and thats really important for me, you know, because having this disease is very scary. Its very scary.

In contrast, other patients, while still being satisfied with the relationship that they had with their physician, described a very different sort of relationship, one that was more professional and business-like. As patient 06 explained, Were not on a first name basis. He calls me by my last name and I call him doctor. . . . Thats just the way he is . . .

These comments suggest that AIDS physicians serve as a sort of anchor for patients they help them deal with a disease that, until recently, was considered to be a death sentence for most patients.

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dont think so. If youre not trusting your doctor, youre not gonna trust the medications. Interviewer: So do you think if you dont have a good relationship with your doctor, maybe youre not going to take your meds? Subject: Yeah, cuz you wouldnt trust your doctor . . . . Some people feel that way. Ive talked to other women [who] wont take their medications, and I think its because they dont have a good relationship with their doctor. Theres no trust there.

Less than optimal physician-patient relationships There were a few instances in the data of previous physician-patient relationships that patients considered to be less than optimal. These tended to occur when there was an uneasy fit between what the patient wanted/expected from his/her physician and what the physician actually provided. For example, if a patient wanted their physician to be a friend (e.g., ask about nonmedical components of life such as lovers, friends, pets, etc., during office visits), and the physician failed to do so (because their consultation style was more business-like or they were rushed or whatever), conflict and/or dissatisfaction often were the result. Some patients recalled switching physicians in the past because of a mismatch between their expectations and the physicians style. As patient 4 explained:
Subject: I had to change the doctor. Interviewer: You changed doctors? Tell me about that. Subject: So maybe 2 years ago, I dont know exactly, but my doctor, my other one, he was really good, but I needed the part thatthe heart part. Interviewer: The heart part? Subject: Yeah . . . just prescribing, but no, you know, How are you today? He was very mechanic.

Hence, this patient preferred a more affective relationship (the heart part)a business-like, mechanical encounter did not meet his needs. Similarly, if a patient wished to be an active participant in the consultation, and the physician preferred to operate in a doctor knows best manner, the resulting physician-patient relationship was often uneasy. Adherence and physician-patient relationships Many patients talked directly and spontaneously about the connection between the quality of the relationship they developed with a physician and their adherence to the antiretroviral medications. The basic theme was If you dont trust your doctor, you wont trust (and take) your meds. An excerpt from patient 23s interview provides illustration:
Subject: If youre not having a good relationship with the doctor, youre not gonna have a good relationship with the medications, either, I mean, I

Other patients revealed that trusting their physician, and having their physician believe in the antiretroviral medications, helped them also believe in the medications. Hence, trusting ones doctor was indirectly related to good adherence. The trust component of physician-patient relationships was seen to be especially vital by some patients. Patient 8 said, Id hate to be an AIDS patient and not trust doctors. Likewise, patient 12 stated, My doctor . . . [says] theres a [antiretroviral] combination . . . she thinks its good, which I think itss good . . . it keeps me up. Patient 06 also maintained, If he says this [antiretroviral medications] would be good for me, I trust that itll be good for me. Physician-patient interactions also were related to patient adherence. In some cases, patients suggested that a good relationship with their doctor allowed them to open up and disclose information about their adherence to the antiretroviral regimens. For example, patient 09 stated that his physician asked him about missing doses at just about every office visit. His physicians gentle, caring way of probing was respected by the patient:
Subject: Hes just checking, I guess. Make sure Im sticking to my routine. Interviewer: Does it help you at all, stay on the routine, that he asks you? Subject: Yeah, you know . . . some docs gonna ask in one way, you wont want to do shit for them. And, some doctors ask another way and you do everything they ask you to do. So, he has that quality, I guess, to ask you a certain way and probe at you a certain way, and you know, yeah, Im doing all right.

Had his physician not had this quality, had he been more threatening or judgmental, this patient may not have felt as free to open up and talk about his adherence. Sometimes simply getting reassurance from a physician and/or having them help trou-

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bleshoot problems was enough for a patient to continue adhering to an antiretroviral regimen. For example, patient 14 revealed that he had had many disturbing side effects from his medications. These side effects had made him consider stopping his regimen. The following is his version of what occurred when he told his physician about wanting to quit his medications:
It was horrible . . . I had a big stomach, all the way out, bloated all the time . . . I was suffering and I walked in, and told her [my physician] . . . Im going to throw all these pills in the garbage. . . . She goes, What? You are going to do no such thing.

Subsequently, the physician changed his medication regimen to alleviate his side effects. To date, the patient has not thrown his pills in the trash can. Alternatively, having an uneasy physicianpatient relationship sometimes had a negative impact on patients adherence. For example, patient 10 explained:
Ive had . . . some very questionable experiences. My first physician . . . went on maternity leave. . . . I was put off on somebody who really didnt seem to want to. I dont know what the issue or what his understanding of a patient relationship was, but he made it very clear that if you have a problem, well deal with it in the future. . . . And that was extraordinarily frustrating, annoying. You questioned the facility, you questioned the integrity of the doctor and everything. And, you want to stop taking your medicines. You dont want to perform whats asked of you.

This patient also revealed that he had had some problems with his antiretroviral medication during the time he was seeing this physician. He subsequently stopped taking the medicine and called his physician. The physician said that he would see him at his next appointment. The next appointment was a couple months away, and patient 10 developed viral resistance during that time period. This instance of nonadherence possibly could have been avoided had this physician been more accessible to his patient. DISCUSSION In this project, most patients were extremely pleased with their physicians and recognized

the value of a good quality physician-patient relationship. These findings give a very different picture of relationships in AIDS care than was common at the beginning of the epidemic. During the 1980s and early 1990s, most all research regarding such relationships in HIV/AIDS care focused on such issues as fear of HIV exposure or the perceived challenges of providing care to certain groups of patients (e.g., injection drug users or gay men).25,26 Although the purpose of this project was not to investigate such issues, that they did not emerge at all from the data is important. Instead, that patients used terms such as friendship and love to describe their relationships with their physicians is significant. There are several possible explanations for the overall good quality of physician-patient relationships found in this project. First, the advent of antiretroviral medications has led to dramatic decreases in AIDS deaths and illnesses.24 This has contributed to a change in the social construction of AIDS. Specifically, in recent years, AIDS has lost some of its stigma. AIDS, in many Americans minds, is no longer the death sentence it used to be. AIDS is becoming thought of as more of a chronic disease and less of a lethal one. This normalizing of AIDS has perhaps carried over into physicianpatient relationships in HIV/AIDS care. Because fear and distrust are perhaps not as central of concerns, more room is left to focus on the good, nurturing aspects of the relationships. Another possible explanation is that the patients in this study were especially satisfied with their physicians because they knew that such physicians were AIDS experts. Patients may have felt lucky to be able to be treated at a premier AIDS clinic by doctors who are among the best of the best. Also, because the physicians interviewed in this project specialized in HIV/AIDS, it may be that they were particularly adept at providing care to their patients. Conversely, it may be that patients were less than forthcoming about their true feelings toward their physicians. Because patients were interviewed only once for the project, there was not a lot of time to build a long-term relationship between interviewer and interviewees.

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Perhaps patients may have been more willing to disclose true accounts of their relationships with their providers under different circumstances, such as during a series of interviews over a prolonged period. Likewise, a different vision of physician-patient relationships may have emerged with the use of participant observation. Future studies could investigate these possibilities. Next, findings from this study suggest that there is a relationship between patients levels of satisfaction with their physicians and their adherence to antiretroviral treatment regimens. Namely, good-quality physician-patient relationships tend to promote adherence while lesser quality relationships may impede it. Underscoring the importance of the physician-patient relationship, patients in this project repeatedly talked about the need for trust in their physicians, stating that if they did not trust their provider they would not trust (and take) their antiretroviral medications. These results suggest that it is crucial for patients with HIV/AIDS to feel at ease with their primary care physicians, as the adherence practices of patients who have uneasy relationships with their physicians may be less than ideal. Importantly, when HIV-positive patients do not feel comfortable with their physicians, they may fail to disclose the truth about their adherence, if and when they are asked. The policy implications from these results are clear: strengthening and promoting the bonds between physicians and patients with HIV/AIDS should be an absolute priority, at both the interpersonal level of physician-patient interactions but also at the organizational level. At the organizational level, HIV/AIDS clinics should establish policies that allow patients to see the same provider over time, rather than seeing a different health care professional each time they visit the clinic, on a drop-in basis. HIV/AIDS clinics should also strive to lengthen the time of office visits as much as possible, thus giving patients and physicians the time necessary to communicate with each other about adherence issues. HIV/AIDS clinics also should establish and/or simplify procedures that allow patients to switch primary care physicians as the need arises. When a physician-patient relationship is not satisfac-

tory, patients should be able to switch easily and swiftly to another physician that better serves their needs. While continuity of care is certainly important in this domain, so is the establishment of a mutually satisfactory and comfortable relationship between doctor and patient. Because of the small sample size and exploratory nature of the study, results from this study should not be generalized to other locales. Future studies should examine the beliefs of patients with HIV/AIDS, levels of health care satisfaction, and adherence practices in a variety of geographical locations, including those places that have fewer HIV/AIDS cases than San Francisco. Also, because not all patients with HIV/AIDS receive treatment from HIV/AIDS specialists, it is important to compare and contrast patients levels of satisfaction with physicians who specialize in caring for those with this HIV/AIDS versus those who receive care from non-HIV/AIDS experts. In conclusion, as the medical treatments for HIV/AIDS become increasingly effective and sophisticated, it is important to remember that physician-patient relationships still play a primary role in HIV-positive individuals lives and can have a substantial effect on their well being. Technological and pharmacologic advances have not replaced the heart part of HIV/AIDS care.

ACKNOWLEGMENTS 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. UCLA Department of Sociology 2201 Hershey Hall, Box 951551 Los Angeles, CA 90095-1551 E-mail: kathleen-j-roberts@yahoo.com

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