An examination of HIV/AIDS patients who have excellent adherence to HAART.

This paper examines the attitudes and beliefs of HIV/AIDS patients with excellent adherence to highly active antiretroviral therapy (HAART) and how they differ from those with suboptimal adherence. Forty-four persons with HIV/AIDS, 28 men and 16 women, participated in a qualitative semi-structured interview which was based on the Health Belief Model. The main outcomes were themes consistent with several dimensions of this model, reflecting differences in the health-related attitudes and beliefs of the excellent adherers compared to the suboptimal adherers. Patients with excellent adherence voiced the following themes when compared to less adherent patients: (1) believed adherence rates needed to be 90-100% for medication efficacy; (2) trusted their primary providers greatly; (3) took medications even when actively using substances of abuse; (4) were open about their HIV status and received substantial social support; (5) cited staying healthy as their key motivator; (6) were not actively depressed; all had normal CESD scores. Our study suggests that patients with excellent adherence to HAART differ from their less adherent counterparts in terms of key health-related attitudes and beliefs. Identifying and studying excellent adherers provides new insights and strategies for enhancing adherence to HAART.

Antiretroviral regimen complexity, self-reported adherence, and HIV patients' understanding of their regimens: survey of women in the her study.

BACKGROUND: Research regarding treatment adherence in chronic diseases, such as hypertension, suggests that increasing complexity in the medication regimen is associated with decreasing patient adherence. However, less is known about the relationship between regimen complexity and adherence in the treatment of HIV/AIDS. OBJECTIVE: To examine the relationship between antiretroviral (ART) regimen complexity and patient understanding of correct regimen dosing to adherence (missing doses in the past 1 and 3 days). METHODS: Cross-sectional survey of a cohort of women living with HIV/AIDS and enrolled in the HER (HIV Epidemiologic Research) Study. RESULTS: Seventy-five percent of patients correctly understood the dosing frequency of their ART medications, 80% understood the food-dosing restrictions, whereas only 63% understood both. The percentage of patients with a correct understanding of dosing decreased with increasing regimen complexity (increased dosing frequency and food-dosing restrictions). Patients were more likely to have missed doses in the previous 3 days if they were taking ART medications three or more times per day or had to take one or more antiretrovirals on an empty stomach. A multivariate logistic regression model demonstrated that patients with less complex regimens (twice daily or less in frequency, no food-dosing restrictions) who correctly understood the dosing and food restrictions of their ART regimen were less likely to have skipped doses in the past three days (odds ratio [OR], 0.4; 95% confidence interval [CI], 0.2-0.7) than those with more complex regimens. Younger age and higher CD4 count were also associated with a reduced likelihood of skipping doses. No association was found between adherence and race/ethnicity, current or past injection drug use, or education. CONCLUSIONS: Self-reported adherence is better among patients with less complex ART regimens. This is in part because patients' understanding of regimen dosing decreases as regimen complexity increases. Therefore, simplifying antiretroviral regimens may have an important role in improving patients' adherence.

Strategies for optimizing adherence to highly active antiretroviral therapy: lessons from research and clinical practice.

Successful treatment of human immunodeficiency virus infection/acquired immunodeficiency syndrome (HIV/AIDS) with highly active antiretroviral therapy (HAART) requires that patients maintain nearly perfect adherence to the prescribed regimen. Suboptimal adherence to antiretroviral therapy is clearly the most common cause of virologic failure of HAART regimens. Given the critical role of adherence in successful antiretroviral therapy, it is essential that providers of care for patients with HIV infection have a strategy that proactively assists and supports their patients' efforts to adhere to medication regimens. This review endeavors to provide a clinically focused approach to optimizing adherence of patients to HAART.

Relation of physician specialty and HIV/AIDS experience to choice of guideline-recommended antiretroviral therapy.

BACKGROUND: Controversy exists regarding who should provide care for those with HIV/AIDS. While previous studies have found an association between physician HIV experience and patient outcomes, less is known about the relationship of physician specialty to HIV/AIDS outcomes or quality of care. OBJECTIVE: To examine the relationship between choice of appropriate antiretroviral therapy (ART) to physician specialty and HIV/AIDS experience. DESIGN: Self-administered physician survey. PARTICIPANTS: Random sample of 2,478 internal medicine (IM) and infectious disease (ID) physicians. MEASUREMENTS: Choice of guideline-recommended ART. RESULTS: Two patients with HIV disease, differing only by CD4+ count and HIV RNA load, were presented. Respondents were asked whether ART was indicated, and if so, what ART regimen they would choose. Respondents' ART choices were categorized as "recommended" or not by Department of Health and Human Services guidelines. Respondents' HIV/AIDS experience was categorized as moderate to high (MOD/HI) or none to low (NO/LO). For Case 1, 72.9% of responding physicians chose recommended ART. Recommended ART was more likely (P <.01) to be chosen by ID physicians (88.2%) than by IM physicians (57.1%). Physicians with MOD/HI experience were also more likely (P <.01) to choose recommended ART than those with NO/LO experience. Finally, choice of ART was examined using logistic regression: specialty and HIV experience were found to be independent predictors of choosing recommended ART (for ID physicians, odds ratio [OR], 4.66; 95% confidence interval [95% CI], 3.15 to 6.90; and for MOD/HI experience, OR, 2.05; 95% CI, 1.33 to 3.16). Results for Case 2 were similar. When the analysis was repeated excluding physicians who indicated they would refer the HIV "patient," specialty and HIV experience were not significant predictors of choosing recommended ART. CONCLUSIONS: Guideline-recommended ART appears to be less likely to be chosen by generalists and physicians with less HIV/AIDS experience, although many of these physicians report they would refer these patients in clinical practice. These results lend support to current recommendations for routine expert consultant input in the management of those with HIV/AIDS.

Primary care of the patient with HIV/AIDS.

Primary care of the person with HIV/AIDS is a complex endeavor with many components. The primary care provider's goal is to combine preventive health care interventions that are known to be effective, with ongoing surveillance and treatment of HIV-related and non-HIV-related medical problems, and effective antiretroviral therapy when indicated. The provider needs to have an approach that enhances trust, involves the patient in important health care decisions, and meets the patient's own expectations for health care.

Frontal lobe contributions to theory of mind.

"Theory of mind," the ability to make inferences about others" mental states, seems to be a modular cognitive capacity that underlies humans" ability to engage in complex social interaction. It develops in several distinct stages, which can be measured with social reasoning tests of increasing difficulty. Individuals with Asperger"s syndrome, a mild form of autism, perform well on simpler theory of mind tests but show deficits on more developmentally advanced theory of mind tests. We tested patients with bilateral damage to orbito-frontal cortex (n = 5) and unilateral damage in left dorsolateral prefrontal cortex (n = 5) on a series of theory of mind tasks varying in difficulty. Bilateral orbito-frontal lesion patients performed similarly to individuals with Asperger"s syndrome, performing well on simpler tests and showing deficits on tasks requiring more subtle social reasoning, such as the ability to recognize a faux pas. In contrast, no specific theory of mind deficits were evident in the unilateral dorsolateral frontal lesion patients. The dorsolateral lesion patients had difficulty only on versions of the tasks that placed demands on working memory.

Perceived barriers and biases in the medical education experience by gender and race.

This study examined barriers and biases in the medical education experience by surveying fourth-year medical students. There were 270 female and 288 male respondents; their racial background was: 21% Asian, 13% underrepresented minorities, and 66% white. Women reported that the careers they were encouraged to pursue were affected by their gender (44% versus 15%) and they were often mistaken for a nonphysician (92% versus 3%). More importantly, women reported that the lack of a mentor of either gender as a large barrier (27% versus 19%). Underrepresented minorities reported that their race caused them to feel that they had to be twice as good to be treated as an equal to other students (52% versus 6%). Underrepresented minorities identified the lack of a same-race mentor (23% versus 4%) and role model (40% versus 1%) as a large barrier. Underrepresented minorities also noted an overall lack of mentors as a large barrier (25% versus 19%). Women and underrepresented minorities from the class of 1996 reported having a medical school experience characterized by similar barriers to their professional development.

Provider attitudes regarding participation of women and persons of color in AIDS clinical trials.

Provider attitudes and perceptions that may influence recruitment and enrollment of diverse patients into AIDS clinical trials were examined by conducting a cross-sectional survey of all HIV/AIDS providers at a municipal teaching hospital. Providers were less likely to feel confident explaining trials to non-English-speaking patients (p < .05). Providers also reported being more confident of their ability to give an overview of clinical trials in culturally appropriate terms to white patients than to patients of other races/ethnicities (p < .05). Many providers perceived the interest in clinical trials by African American (25%), Latino (14%), and Haitian patients (30%) to be lower; and primarily cited suspicions about clinical research as the reason. Some providers (13%) perceived that women with HIV/AIDS are less interested in clinical trials. Despite these perceptions, all providers reported that they are just as likely to inform women and African Americans about available clinical trials; a small proportion reported that they were less likely to inform Latinos (6%) and Haitians (11%). None of these findings differed significantly by provider race, gender, HIV experience, languages spoken, or specialty. Underrepresentation of minorities and women in AIDS Clinical Trials may partially result from attitudes and perceptions of providers.

HIV/AIDS patients' perspectives on adhering to regimens containing protease inhibitors.

OBJECTIVE: To gather qualitative data regarding HIV/AIDS patients' perspectives about HIV-1 protease inhibitors (PIs), and about their experiences taking and adhering to regimens containing PIs. DESIGN: Six focus groups of persons under care for HIV were conducted between September and November 1996 regarding participants' knowledge, awareness, experiences when taking, and adherence to antiretroviral regimens containing PIs. An identical discussion guide was used to facilitate all six groups. Focus group proceedings were audiotaped, transcribed, coded for themes, and analyzed qualitatively. SETTING: HIV/AIDS practices of three teaching hospitals and two community health centers. PATIENTS/PARTICIPANTS: Fifty-six patients with HIV disease: 28 men and 28 women. MEASUREMENTS AND MAIN RESULTS: Knowledge and positive impressions of PIs were prevalent among this diverse group of persons with HIV, and did not differ by race/ethnicity or gender. Most knew that these were new, potent medications for treating HIV/AIDS. Networks of persons with HIV and medical providers were the most important information sources. Those taking PIs were aware that adherence to the regimen is important, and most were using special strategies to maximize their own adherence, but expressed considerable frustration about the central role these medication regimens had assumed in their life. A subset who did not believe they would adhere to these regimens had declined treatment with them. Motivating factors for taking and adhering to these complex regimens were improving CD4 counts and viral loads and the patient-provider relationship. CONCLUSIONS: Among those with HIV/AIDS, awareness of PIs and their effectiveness is substantial, owing to the impact of informal networks and medical providers. This early positive "reputation" of PIs may enhance motivation for adherence. Those who are taking PIs invest substantial effort adhering to these complex regimens, but resent the need to make medications the focus of their lives.

Cardiac manifestations of HIV/AIDS: a review of disease spectrum and clinical management.

HIV and AIDS involve multiple organ systems. Lungs, brain, skin, gastrointestinal tract, kidneys, and heart are the major organs targeted by the direct effects of HIV infection and the secondary opportunistic complications of AIDS. Although most other organ system involvement has been extensively described in numerous studies and reviews, cardiac abnormalities related to HIV infection have remained less well characterized, partially because their pathogenesis was less clear and their clinical significance was uncertain. Most studies that have described cardiac complications in AIDS patients were postmortem, although some clinical series have been reported. It is now clear that cardiac involvement in AIDS patients is relatively common. Although most such conditions are clinically quiescent, some may have devastating and fatal outcomes. Pericardial effusion and myocarditis are among the most commonly reported abnormalities. Cardiomyopathy, endocarditis, and coronary vasculopathy have also been reported. In this review, we discuss the most common cardiac abnormalities in HIV-infected patients, as well as their clinical significance, clinical presentation, and management.

The Boston AIDS Survival Score (BASS): a multidimensional AIDS severity instrument.

OBJECTIVES: This study developed a new acquired immunodeficiency syndrome (AIDS) severity system by including diagnostic, physiological, functional, and sociodemographic factors predictive of survival. METHODS: Three-hundred five persons with AIDS in Boston were interviewed; their medical records were reviewed and vital status ascertained. RESULTS: Overall median (+/- SD) survival for the cohort from the first interview until death was 560 +/- 14.4 days. The best model for predicting survival, the Boston AIDS Survival Score, included the Justice score (stage 2 relative hazard [RH] = 1.25, 95% confidence interval [CI] = 0.80, 1.96; stage 3 RH = 1.76, 95% CI = 1.15, 2.70), a newly developed opportunistic disease score (Boston Opportunistic Disease Survival Score; stage 2 RH = 1.35, 95% CI = 0.90, 2.02; stage 3 RH = 2.10, 95% CI = 1.38, 3.18), and measures of activities of daily living (any intermediate limitations, RH = 1.84, 95% CI = 1.05, 3.21; any basic limitations, RH = 2.60, 95% CI = 1.44, 4.69). This model had substantially greater predictive power (R2 = .17, C statistic = .68) than the Justice score alone (R2 = .09, C statistic = .61). CONCLUSIONS: Incorporating data on clinically important events and functional status into a physiologically based system can improve the prediction of survival with AIDS.

Race, gender, drug use, and participation in AIDS clinical trials. Lessons from a municipal hospital cohort.

OBJECTIVES: To determine whether participation rates of women, persons of color, and injection drug users in AIDS clinical trials are similar to those of other HIV/AIDS patients, and to examine whether differences in patients' knowledge of clinical trails or reasons for not participating explain differences in participation rates by gender, race, or drug use. DESIGN: Cross-sectional survey of patients with HIV disease. SETTING: Ambulatory practice of a municipal teaching hospital. PATIENTS: Two hundred sixty patients receiving primary care for HIV disease. MEASUREMENTS AND MAIN RESULTS: Overall, 22.3% of patients had participated in a clinical trail. Women, patients of color, and drug users were significantly less likely to have ever participated in an AIDS clinical trial (p < .05). Multiple logistic regression confirmed being a person of color (odds ratio [OR] 2.14; 95% confidence interval [CI] 1.12-4.08) and injection drug use (OR 2.09; 95% CI 1.08-4.04) as significant predictors of nonparticipation in AIDS clinical trials (p < .05). Patients of color and women reported less knowledge of clinical trials, and were less likely to have been told about clinical trials for which they were eligible (p < .05). Patients of color were half as likely as whites to cite ineligibility as their reason for not participating (10.4% vs 22.4%). and more likely to hold unfavorable opinions of clinical research (50.7% vs. 40.5%). Reasons for nonparticipation did not differ by gender. CONCLUSIONS: Even when AIDS clinical trials are available on-site, persons of color, women, and drug users are less likely to participate. Educational efforts for patients and providers are needed to remedy continuing disparities in participation by race, gender, and risk factor group in AIDS clinical trials.

Left hemisphere representations of emotional facial expressions.

Researchers have suggested that the right hemisphere is superior at processing emotional facial expressions because it contains stored perceptual 'templates' of facial expressions. We tested each hemisphere of a split-brain patient on two tasks involving emotional facial expressions. Both hemispheres performed equally well and significantly above chance matching facial expressions with emotion words. The subject's right hemisphere consistently performed well judging whether two facial expressions were the same or different. His left hemisphere performed poorly on this discrimination task at first, but showed a sharp improvement when the instructions were changed slightly, emphasizing verbal labels for the facial expressions. Results suggest that 'facial expression templates' may not be stored only on the right.

Satisfaction with ambulatory care of persons with AIDS: predictors of patient ratings of quality.

OBJECTIVE: To examine the relation of patient characteristics and site of care to the perception of ambulatory care quality by persons with AIDS (PWAs). DESIGN: Patient surveys and medical record review were used to determine PWAs' perceptions of their ambulatory care, self-perceived health status, primary care relationships, sociodemographic characteristics, and severity of illness. SETTING: A public-hospital HIV clinic, an academic group practice, and a staff-model health maintenance organization (HMO) that together care for 20% of all Massachusetts PWAs. PATIENTS: All active patients as of February 12, 1990, and all new AIDS patients at each of the three sites during the subsequent 13 months. MEASUREMENTS AND MAIN RESULTS: The primary outcome measure was a six-item scale of patient-rated quality of care (PRQC), a newly developed measure that combined patients' ratings of their physician care, nursing care, involvement in medical decisions, and overall quality of care. Multiple logistic regression was carried out with low PRQC (lowest quartile) as the dependent variable, to identify correlates of patient perceptions of poor quality. Patients who had a primary nurse were significantly less likely to have low PRQC scores (OR = 0.50, 95% CI = 0.26 to 0.97). Black patients and patients who used injection drugs were significantly more likely to rate their care in the lowest quartile (OR = 2.22, 95% CI = 1.04 to 4.78; and OR = 2.43, 95% CI = 1.13 to 5.23, respectively), as were those who had lower self-perceived health status, after controlling for confounders; no association was found by site or severity. CONCLUSIONS: These results show that primary nursing may be an important determinant of how PWAs rate the quality of their ambulatory care. Furthermore, PWAs who are black or who are injection drug users are less satisfied than are others with the quality of their ambulatory AIDS care.

Costs of medical care and out-of-pocket expenditures for persons with AIDS in the Boston Health Study.

We examined the cost of health care and out-of-pocket medical expenditures for 189 persons with AIDS at three sites in Massachusetts: an HMO; a public hospital immunodeficiency clinic; and a group practice at a major teaching hospital. The mean cost of care during a four-month reference period was $9,093 +/- $12,683 (mean +/- standard deviation) per patient. Thirty-six percent of the cost was due to hospital care and 40% was due to home health care. Mean out-of-pocket expenditures were $429 +/- $991 (mean +/- standard deviation). Studies that focus on the cost of hospital care may seriously underestimate the medical costs of AIDS.

Changes in insurance status and access to care for persons with AIDS in the Boston Health Study.

The purpose of this study was to measure unmet needs and changes in insurance status for persons with acquired immunodeficiency syndrome (AIDS). Thirty-six percent of the study's Boston-area respondents (n = 305) had a change in insurance coverage between AIDS diagnosis and interview. Medicaid coverage increased from 14% to 41%. Pneumocystis carinii pneumonia prophylaxis was nearly universal. Only 5% did not receive zidovudine, and intravenous drug users were at higher risk. Approximately 14% to 15% of patients reported problems in obtaining medical and dental services; Blacks, homeless persons, and those who were not high school graduates were at higher risk. Use of selected treatments for which there were clear clinical guidelines was adequate, yet disadvantaged groups were more likely than other persons with AIDS to face obstacles to other services.

The effects of intravenous drug use and gender on the cost of hospitalization for patients with AIDS.

At present limited data exist describing the hospital use patterns of intravenous drug users (IVDUs) and women with AIDS. Our objective was to determine if frequency of hospitalization, length of stay (LOS), and cost per hospitalization varied by risk status and gender, controlling for a variety of confounders, including severity of illness as measured by the Turner-Kelly-Ball and Justice AIDS severity of illness systems. We performed a population-based cohort study that compared all women (n = 69) and male IVDUs (n = 74) with AIDS diagnosed in Massachusetts in 1987 with a random sample of all male, nonintravenous drug-using patients diagnosed in that year (n = 148). Frequency of hospitalization, LOS, and cost of hospital care were obtained from hospital billing records for 1987 and 1988. Regression analysis showed 42% longer lengths of stay (p < or = 0.001) and 38% higher cost (p < or = 0.001) per hospitalization for IVDUs with AIDS compared with non-IVDU homosexual AIDS patients. No statistically significant differences by gender were observed. Our results suggest that hospital care for IVDUs is likely to be more expensive. Policymakers should incorporate these data when planning for AIDS care. In addition, instruments to assess severity of illness should incorporate information on intravenous drug use.