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BackgroundFindings on the association between health literacy and anti-retroviral (ARV) adherence are inconsistent. Health literacy is usually operationalized with simple tests of basic literacy, but more complex conceptions of health literacy include content knowledge. People living with chronic illness also conceptualize and experience illness in ways other than biomedical or mechanistic models of disease.ObjectiveThere are no instruments that comprehensively assess knowledge of people living with HIV concerning HIV disease and treatment; or psychological adjustment to being HIV+. Little is known about the relationship between factual knowledge, or positive identification as HIV+, and anti-retroviral (ARV) adherence.MethodsFormative work with in-depth semi-structured interviews, and cognitive testing, to develop a structured instrument assessing HIV-related knowledge, and personal meanings of living with HIV. Pilot administration of the instrument to a convenience sample of 101 respondents.Key ResultsRespondents varied considerably in their expressed need for in-depth knowledge, the accuracy of their understanding of relevant scientific concepts and facts about ARV treatment, and psychological adjustment and acceptance of HIV+ status. Most knowledge domains were not significantly related to self-reported ARV adherence, but accurate knowledge specifically about ARV treatment was (r=0.25, p=.02), as was an adapted version of the Need for Cognition scale (r=.256, p=.012). Negative feelings about living with HIV (r=.33, p=.0012), and medication taking (r=.276, p=.008) were significantly associated with non-adherence.ConclusionThe instrument may be useful in diagnosing addressable reasons for non-adherence, as a component of psychoeducational interventions, and for evaluation of such interventions.PLAIN LANGUAGE SUMMARYWe developed a questionnaire for people with HIV. General knowledge about HIV wasn’t related to whether people took their medications, but specific information about treatment was. People with lots of bad feelings about living with HIV were less likely to take medications as prescribed. People who liked to think more about their decisions were more likely to take their medications.

While some studies have assessed patient recall of important information from ambulatory care visits, none has done so recently. Furthermore, little is known about features of clinical interactions which are associated with patient understanding and recall, without which shared decision making, a widely shared ideal for patient care, cannot occur. Our objective was to evaluate characteristics of patients and outpatient encounters associated with patient recall of information after one week, along with observation of elements of shared decision making. This was an observational study based on coded transcripts of 189 outpatient encounters, and post-visit interviews with patients 1 week later. Coding used three previously validated systems, adopted for this study. Forty-nine percent of decisions and recommendations were recalled accurately without prompting; 36% recalled with a prompt; 15% recalled erroneously or not at all. Provider behaviors hypothesized to be associated with patient recall, such as open-questioning and "teach back," were rare. Patients with less than high school education recalled 38% of items freely and accurately, while patients with a college degree recalled 65% (p < .0001). In a multivariate model, the total number of items to be recalled per visit, and percentage of utterances in decision-making processes by the provider ("verbal dominance"), were significant predictors of poorer recall. The item count was associated with poorer recall for lower, but not higher, educated patients.

To develop methods to reliably capture structural and dynamic temporal features of clinical interactions.Observational study of 50 audio-recorded routine outpatient visits to HIV specialty clinics, using innovative analytic methods. The comprehensive analysis of the structure of encounters system (CASES) uses transcripts coded for speech acts, then imposes larger-scale structural elements: threads--the problems or issues addressed; and processes within threads--basic tasks of clinical care labeled presentation, information, resolution (decision making) and Engagement (interpersonal exchange). Threads are also coded for the nature of resolution.61% of utterances are in presentation processes. Provider verbal dominance is greatest in information and resolution processes, which also contain a high proportion of provider directives. About half of threads result in no action or decision. Information flows predominantly from patient to provider in presentation processes, and from provider to patient in information processes. Engagement is rare.In this data, resolution is provider centered; more time for patient participation in resolution, or interpersonal engagement, would have to come from presentation.Awareness of the use of time in clinical encounters, and the interaction processes associated with various tasks, may help make clinical communication more efficient and effective.

M Barton Laws,1 Gary S Rose,2 Tanya Bezreh,1 Mary Catherine Beach,3 Tatiana Taubin,1 Laura Kogelman,4 Marcia Gethers,3 Ira B Wilson11Department of Health Services Policy and Practice, Brown University, Providence, RI, USA; 2Massachusetts School of Professional Psychology, Boston, MA, USA; 3Johns Hopkins University School of Medicine, Baltimore, MD, USA; 4Tufts Medical Center, Boston, MA, USAAbstract: Studies have found that physician–patient relationships and communication quality are related to medication adherence and outcomes in HIV care. Few qualitative studies exist of how people living with HIV experience clinical communication about their self-care behavior. Eight focus groups with people living with HIV in two US cities were conducted. Participants responded to a detailed discussion guide and to reenactments of actual physician–patient dialogue about antiretroviral adherence. The 82 participants were diverse in age, sex, and ethnicity. Most had been living with HIV for many years and had stable relationships with providers. They appreciated providers who knew and cared about their personal lives, who were clear and direct about instructions, and who were accessible. Most had struggled to overcome addiction, emotional turmoil, and/or denial before gaining control over their lives and becoming adherent to medications. They made little or no causal attribution for their transformation to any outside agency, including their providers. They generally saw medication adherence as a function of autonomous motivation. Successful coping with HIV with its prevalent behavioral comorbidities, stigma, and other challenges requires a transformation of identity and internalization of motivation to maintain health. Effective methods for clinicians to support such development are needed.Keywords: HIV, physician–patient communication, treatment adherence

Tanya Bezreh1, M Barton Laws1, Tatiana Taubin1, Dena E Rifkin2, Ira B Wilson11Health Services Policy and Practice, Brown University, Providence, RI, USA; 2Divisions of Nephrology and of Preventive Medicine, University of California, San Diego, CA, USAAbstract: Patients frequently do not take medicines as prescribed and often do not communicate with their physicians about their medication-taking behavior. The movement for “patient-centered” care has led to relabeling of this problem from “noncompliance” to “nonadherence” and later to a rhetoric of “concordance” and “shared decision making” in which physicians and patients are viewed as partners who ideally come to agreement about appropriate treatment. We conducted a qualitative content analysis of online comments to a New York Times article on low rates of medication adherence. The online discussion provides data about how a highly selected, educated sample of patients thinks about medication use and the doctor–patient relationship. Our analysis revealed patient empowerment and self-reliance, considerable mistrust of medications and medical practice, and frequent noncommunication about medication adherence issues. We discuss how these observations can potentially be understood with reference to Habermas’s theory of communicative action, and conclude that physicians can benefit from better understanding the negative ways in which some patients perceive physicians’ prescribing practices.Keywords: patient–provider communication, trust, medical decision making, dissent and disputes, culture of medicine, health literacy