Overview of findings and comparison of San Francisco and Copenhagen
The main communication patterns were similar in San Francisco and Copenhagen. In both settings, in-depth discussions between patient and physician were rare, although adherence was mentioned in more than half of the consultations. Patients hardly ever brought up the subject themselves and when physicians brought up the subject, patients usually gave brief answers that often had low believability. It emerged that physicians had individual communication patterns, which were not only determined by their perceptions about patients' adherence, but also strongly influenced by their perceptions about the awkwardness of discussing adherence with patients and their perceptions about the believability of patients' statements on adherence. These three aspects of physician perceptions depended on the general attitudes of the physicians as well as the specific circumstances with a specific patient (e.g., when a physician suspected that a patient was non-adherent, it was a function of his or her general suspicion of non-adherence as well as the observation of specific clues in this specific patient). The physicians' age, gender, experience, and education did not emerge as main determinants of their communication with patients about adherence to HAART.
We here propose a model of how physicians' perceptions of these three factors (adherence, awkwardness, and believability) shaped their decision to ask about adherence, their possible pre-questioning preparations, their phrasing of the question, and their response to the patient's answer. We present a simple outline of the model (Figure 1) and an expanded version with subcategories (Figure 2). The model is further explored in the body of this paper. We first describe the three perception factors and their main determinants (or "subcategories"). Then we describe the main ways that physicians act during the four steps in the communication process and how the three perception factors influence these actions. In turn, we briefly look at the consequences of these actions for the awkwardness, believability, and adherence information content of patient responses as perceived by physician and researcher.
We observed a few differences between San Francisco and Copenhagen in terms of adherence communication. Average consultations were longer in San Francisco than in Copenhagen (26 vs. 16 minutes) (Table 1) and the subject of adherence was mentioned in 36 of 49 (73%) consultations in San Francisco compared to 58 of 95 (61%) in Copenhagen. Adherence discussions were slightly more comprehensive in San Francisco, where a question style implying that the patient had missed some doses of medication was mainly observed, whereas a question style implying good adherence was mainly observed in Copenhagen (described in more detail later). The atmosphere seemed less formal in San Francisco than in Copenhagen, e.g., some physicians gave patients a hug or told them about incidents from the physicians' own private lives. Since the similarities between communication patterns in San Francisco and Copenhagen were so much larger than the differences, in this paper we will not further dwell on the differences.
Factor A: Adherence perceptions
Physicians' communication with patients about adherence was – not surprisingly – strongly influenced by their perceptions about the patients' degree of adherence and the perceived importance of adherence.
Physicians determined the degree of adherence both from the treatment effect (viral load) as well as from situational factors. If the patient had a rising viral load, physicians would virtually uniformly be suspicious that the patient might have low adherence, especially if the viral load was rising from very low (i.e., "undetectable") levels. However, the interpretation of an undetectable (or otherwise stable) viral load varied considerably, since some would consider this proof that the patient was sufficiently adherent, whereas others would still be very alert for poor adherence. Physicians' interpretations of the patients' situational factors varied considerably. However, all physicians generally made an overall assessment based on the patient's lifestyle, abuse patterns, perceived personality, and timing of medication refills, and they listened to patients' statements regarding adherence.
Most physicians had the general perception that adherence was very important: "It's the most important limiting factor in treatment," (SF3) or "I do a lot, I think, around adherence issues 'cause the stakes are so high" (SF11). A few physicians, however, felt that there was no need to worry much about adherence, as long as the viral load was undetectable, and others did not worry if the patient already had multi-drug resistance and a high viral load. For example, one part of an interview went like this: "INT: Can you say more about to what degree [patients] are sufficiently adherent when they are undetectable? ... DR: Well, I mean what is the goal of anti-viral therapy? I guess it's to drive the virus to undetectable [...] INT: So you don't think they could be missing enough to be at risk of developing resistance? DR: I don't care. That's not a big worry to me – I'm not a big resistance-phobic person" (SF13). Physicians who did not consider adherence to be an important issue tended to communicate less with patients on the subject.
Factor B: Perceived awkwardness of exploring adherence
Physicians seldom spontaneously declared that exploring adherence was an awkward thing to do. But when physicians were asked in the interview why they had touched on the subject the way they did, perhaps only superficially or not at all, they often explained that further explorations were unnecessary and also would have been too awkward: "Some patients can get a bit offended if you ask [about adherence]... They may feel that the trusting relationship is challenged... I remember one patient who got very defensive and said 'But you know that I have always taken the medicine, why do you now suddenly start sitting there saying things like that'." (Cph8).
Physicians mainly perceived explorations into adherence to be too awkward if the patient had stated good adherence on previous visits: "It's the awkwardness of the repetition of the series of questions" (SF7). Physicians also perceived explorations to be awkward when there were no objective signs of non-adherence, when there were other pressing issues in the consultation, or if the physician perceived the relation with the particular patient to be difficult and fragile.
Explorations were also often considered awkward if the physician generally focused very much on showing patients respect and on avoiding creating feelings of guilt: "I think [the physician] being in loco parentis too much is not what adult [patients] are going to really be thrilled about. You're more apt to get positive results if you're trusting and a little lenient" (SF13), or "I'll rather praise people than make them feel guilty by insisting on exploring something that may not be working ideally, but which works okay" (Cph15).
Exploring adherence was not perceived as awkward if the physician had a "de-shaming" communication style (see below), did not worry about the patients' possible feelings of shame and the believability of the answer, or did not perceive the patient relation to need special nurturing.
Factor C: Believability perceptions
Believability issues were also important during all four steps of physicians' communication strategies and were determined by the specific situation as well as the physician's general perceptions.
In the specific situation, the believability of a patient's claims of good adherence was evaluated by physicians from their independent assessment of the patient's degree of adherence (based on viral load and situational factors as described above), coupled with the patient's perceived general trustworthiness and the phrasing and tone of the patient's adherence statements. If the patient was very firm in his intonation or detailed in his description of medication intake, the patient's answer would more often be believed. If patients disclosed non-adherence, physicians practically always believed this, although they sometimes felt the non-adherence was understated.
Physicians differed in their general perceptions regarding believability. Some physicians felt that patient statements on adherence were generally believable: "I actually believe what patients tell me" (Cph1), and physicians could even seem torn between their suspicion of poor adherence and an almost moral obligation to trust patients. Others accepted low believability with ease: "It's ... in my opinion, one of the hardest things to get a truthful answer for (SF9).
The underlying reasons for low believability were explained by physicians in various ways. Quite often, low believability was explained by the patient's politeness or sympathy with the doctor: "Clients are very aware of what their doctors want to hear, particularly if they like their doctor" (SF9), or by the patient's shame: " [Admitting having missed doses] is an admission of failure. And then they think the doctor finds them stupid or not serious about it" (Cph13). Low believability of patients' answers was seldom attributed to poor memory or mental repression, though sometimes to "craziness" or unacceptable manipulation and arrogance: "I just don't want to sit there and be ridiculed ... that they just sit and decide they know better than me" (Cph14).
In the following, we will explore how physicians' perceptions of adherence, awkwardness, and believability influence the way physicians handle the four steps in the communication process.
Step 1: Deciding whether to ask about adherence or not
Some physicians rarely asked about adherence, others asked only superficially, and very few asked most of their patients in depth. Physicians' decision to ask or not was largely determined by their perceptions of adherence, awkwardness, and believability. Patients hardly ever brought up the subject themselves.
Generally, physicians usually asked about adherence if they perceived a patient's adherence to be low and they perceived adherence to be an important issue.
However, if physicians perceived the specific patient's adherence to be good, or if they generally did not consider it a very important issue, they often felt that it was not necessary to ask, and also that it would have been awkward to do so: "The reason that I do not ask more [... about adherence] could be that it feels unnecessary. And it could perhaps seem like a silly question, sometimes" (Cph1).
Physicians sometimes would not ask about adherence if they had very low trust in the believability of patients' answers on this issue: "To ask 'Do you sometimes forget to take your medication' can be used for nothing ... There are these studies we have seen, showing it is useless. It's fifty-fifty whether they answer yes or no – no matter what situation they have been in" (Cph7).
On the other hand, physicians could also be led to abstain from asking about adherence if they trusted the patients so much that they even expected them to spontaneously tell about possible adherence problems: "I will not ask ... everybody whether they have ... forgotten a dose on a single occasion ... this of course has to do with that I generally believe ... patients' bring up their problems to surface" (Cph1).
Step 2: Pre-questioning preparations
Physicians were asked if they did anything to facilitate communication about adherence. Most answered that they – even before asking about adherence – tried to create a trusting, informal, and friendly atmosphere. Physicians often felt this "de-shamed" patients and made it easier for patients to be honest, e.g., about non-adherence. Many physicians were also observed to have an informal body language, to use slang and jokes, and to chat with patients about private things, like how the patient had spent his vacation.
Physicians usually popped adherence questions abruptly without warning. Only when physicians were very aware of awkwardness and the need to promote believability did they prepare patients for the question with a "warning shot," e.g. by referring to prior discussions or the results of recent blood tests. One physician was also observed to "de-shame" a patient by generalizing adherence problems prior to asking about adherence, saying: "Most people find it hard to remember taking the medication" (Cph8). This remark did trigger disclosure of non-adherence and other physicians referred to prior successful use of similar phrases.
Step 3: Phrasing the question
When physicians individualized questions and picked from a broad palette of question styles and content it seemed to facilitate elaborate answers. However, most physicians used a favorite phrase with most patients.
Question styles
Broad and open questions were common. Physicians asked, "How are you doing with the medication?" (SF11) or "How is it going with taking the medication?" (SF15). Patients' first answers were often only superficial or not about adherence. Only when physicians gave very much priority to adherence, would they follow-up with questions that were more specific.
Suggestive questions were also common. Suggestive questions implying that some doses might have been missed could be, "How many doses have you missed in the last 14 days" (SF14). Such questions were mainly asked when physicians were very focused on the need to promote believability. Physicians felt such phrasing made it less awkward for people to admit having missed doses, because "this means everybody is missing" (SF14). On the other hand, suggestive questions implying good adherence could be, "You don't have any problems taking your medication, do you?" (Cph11). This kind of phrasing was mainly used when physicians were less focused on the need to promote believability and more focused on maintaining a respectful, non-awkward communication in general. Such phrases seemed to function mainly as a reminder to the patient of the importance of adherence and less as a facilitator of in-depth dialogue on the subject.
The tone of questions was mentioned by a few physicians who focused a lot on believability: "I always ask to what degree they're taking their pills and I try to do it in a low-key manner – kind of like offhand – so that my patients have an absolute sense that they can tell me everything" (SF1).
Content of questions
Questions about the quantity of missed doses were common when physicians perceived adherence to be important. These questions were used both to assess adherence and to remind the patient of its importance. Different degrees of specificity in number and time range were addressed, though a time range of two weeks was often used. Answers to these questions were often vague and their believability was often not convincing both to the physician and the observer.
Questions about the qualitative adherence-related aspects of medication intake were mainly asked when adherence was perceived to be an important but potentially awkward issue. These seemed less awkward to ask than questions about the quantity, and the answers seemed more believable. Three main topics were addressed:
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Knowledge of the regime: Whether patients could describe their regime was routinely checked by some: "I want to know what they are really taking, because... so many times they are not taking what is [written] on the bottle" (SF7).
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Motivation for treatment and adherence: This was mainly asked about by checking for side effects, which were often perceived to be the main motivational barrier to treatment. The patients' perception of positive treatment effects or their motivation for adherence was very seldom asked about.
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Behavioral patterns. Only when physicians gave adherence very high priority and they were very aware of the awkwardness of the subject did they ask about the routines patients had or could develop for taking and remembering the medication, and how they handled difficult adherence situations. Patients did, however, seem to talk more freely about these practical problems with adherence and seemed to become aware of new solutions.
Step 4: Responding to patients' answers – handling varying degrees of believability
Responses to patients stating good adherence with high believability
When physicians perceived the believability of a statement on good adherence to be high, they would usually briefly acknowledge the answer, perhaps with praise, a warning about the possible consequences of non-adherence, or a question about side effects. Many physicians felt that a further exploration of the patient's adherence strategies would be awkward and unnecessary in this situation.
Responses to patients stating good adherence with low believability
Physicians responded to patients' statements of good adherence with low believability in three ways: Okaying, circumventive dialoguing, and confronting.
Okaying the answer despite its low believability was mainly done when physicians thought adherence was not that important, or that further explorations would be awkward, mainly because the relation to the patient was fragile. One physician more generally okayed patient statements even when they had low believability: "It was the message I wanted to send – that they can answer me whatever they want" (Cph15).
Circumventive dialoguing is here defined as continuing the communication on adherence without drawing attention to the possible low believability of patient statements. One important way to do circumventive dialoguing was to address the qualitative adherence-related aspects of medication intake instead of the quantity of missed doses, e.g., by asking what time of the day the medicine was taken, whether it was taken with food, etc. Another kind of circumventive dialogue was to re-ask closed questions about occurrence of missed doses, but with altered specificity regarding the time frame or number of missed doses. This was several times observed to elicit otherwise hidden non-adherence. For example, one dialogue went like this (SF2):
"Any problems with the medicine?"
"No."
"You take them all?"
"Yes, the 3TC, the Viramune... and the eeh, Epivir."
"Any problems taking them?"
"No."
"You took them this morning?"
"No man! I did not take them this morning!"
Confronting low believability covers a range of reactions from subtle signals of doubt to clear expressions of anger. For example, physicians confronted patients without being aggressive by stating that the patient's rising viral load without mutations was most easily explained by low adherence. Sometimes physicians explicitly asked for honesty. When physicians perceived low believability as unacceptable they were sometimes observed to shame the patient for lying or to get upset and angry, i.e., they displayed a raised voice and flushing skin.
Responses to patients stating poor adherence
Physicians virtually always believed in statements of poor adherence. Physicians explored the underlying reasons for poor adherence and attempted to assist with behavioral advice or they tried to strengthen motivation for adherence through information, condemnation, or shaming of the patient.