Disclosing large scale adverse events in the US Veterans Health Administration: lessons from media responses.

OBJECTIVES: We examined print, broadcast and social media reports about health care systems' disclosures of large scale adverse events to develop future effective messaging. STUDY DESIGN: Directed content analysis. METHODS: We systematically searched four communication databases, YouTube and Really Simple Syndication (RSS) feeds relating to six disclosures of lapses in infection control practices in the Department of Veterans Affairs occurring between 2009 and 2012. We assessed these with a coding frame derived from effective crisis and risk communication models. RESULTS: We identified 148 unique media reports. Some components of effective communication (discussion of cause, reassurance, self-efficacy) were more present than others (apology, lessons learned). Media about 'promoting secrecy' and 'slow response' appeared in reports when time from event discovery to patient notification was over 75 days. Elected officials' quotes (n = 115) were often negative (83%). Hospital officials' comments (n = 165) were predominantly neutral (92%), and focused on information sharing. CONCLUSIONS: Health care systems should work to ensure that they develop clear messages focused on what is not well covered by the media, including authentic apologies, remedial actions taken, and shorten the timeframe between event identification and disclosure to patients.

Hepatitis C testing practices and prevalence in a high-risk urban ambulatory care setting.

Approximately 3.2 million persons are chronically infected with the hepatitis C virus (HCV) in the U.S.; most are not aware of their infection. Our objectives were to examine HCV testing practices to determine which patient characteristics are associated with HCV testing and positivity, and to estimate the prevalence of HCV infection in a high-risk urban population. The study subjects were all patients included in the baseline phase of the Hepatitis C Assessment and Testing Project (HepCAT), a serial cross-sectional study of HCV screening strategies. We examined all patients with a clinic visit to Montefiore Medical Center from 1/1/08 to 2/29/08. Demographic information, laboratory data and ICD-9 diagnostic codes from 3/1/97-2/29/08 were extracted from the electronic medical record. Risk factors for HCV were defined based on birth date, ICD-9 codes and laboratory data. The prevalence of HCV infection was estimated assuming that untested subjects would test positive at the same rate as tested subjects, based on risk-factors. Of 9579 subjects examined, 3803 (39.7%) had been tested for HCV and 438 (11.5%) were positive. The overall prevalence of HCV infection was estimated to be 7.7%. Risk factors associated with being tested and anti-HCV positivity included: born in the high-prevalence birth-cohort (1945-64), substance abuse, HIV infection, alcohol abuse, diagnosis of cirrhosis, end-stage renal disease, and alanine transaminase elevation. In a high-risk urban population, a significant proportion of patients were tested for HCV and the prevalence of HCV infection was high. Physicians appear to use a risk-based screening strategy to identify HCV infection.

The hepatitis C self-management programme: a randomized controlled trial.

Chronic hepatitis C (HCV) infection afflicts millions of people worldwide. While antiviral treatments are effective for some patients, many either cannot or choose not to receive antiviral treatment. Education about behavioural changes like alcohol avoidance and symptom management, in contrast, is universally recommended, particularly in HCV-infected persons from disadvantaged groups where liver risk factors are most prevalent. Self-management interventions are one option for fostering improved HCV knowledge and health-related quality of life (HRQOL). One hundred and thirty-two patients with VA with HCV (mean age of 54.6, 95% men, 41% ethnic minority, 83% unmarried, 72% unemployed/disabled, 48% homeless in last 5 years) were randomized to either a 6-week self-management workshop or an information-only intervention. The weekly 2-h self-management sessions were based on cognitive-behavioural principles and were adapted from an existing self-management programme that has been efficacious with other chronic diseases. HCV-specific modules were added. Outcomes including HRQOL, HCV knowledge, self-efficacy, depression, energy and health distress were measured at baseline and 6 weeks later. Data were analysed using ANOVA. When compared to the information-only group, participants attending the self-management workshop improved more on HCV knowledge (P < 0.001), HCV self-efficacy (P = 0.011), and SF-36 energy/vitality (P = 0.040). Similar trends were found for SF-36 physical functioning (P = 0.055) and health distress (P = 0.055). Attending the self-management programme improved disease knowledge and HRQOL 6 weeks later in this disadvantaged population. The intervention can improve the health of people with hepatitis C, independent of antiviral therapy. Future research will study longer-term outcomes, effects on antiviral treatment and costs.

Balancing disfigurement and fear of disease progression: Patient perceptions of HIV body fat redistribution.

This study was conducted to identify and describe the perceived morphologic changes of body fat redistribution and related distress among persons taking combination antiretroviral therapy. Six focus group interviews were conducted in four different US cities with men and women (n = 58) who reported antiretroviral-related symptoms of body fat loss and/or gain. Interview data were audiotaped, transcribed verbatim and systematically analysed using inductive techniques. Physical discomfort and impairment and psychological and social distress were reported across sex, sexual orientation and geographic subgroups. While participants acknowledged that antiretroviral drugs were keeping them alive, there was tension between the desire for life-sustaining treatment and optimal quality of life. Some participants engaged in harmful heath behaviours in an attempt to control bodily changes (e.g. non-adherence to antiretroviral regimen). Participants feared that fat loss represented disease progression and worried that visible changes would lead to unintentional disclosure of their HIV status. Although a potential source of support, healthcare providers were commonly perceived as ignoring and, in so doing, discrediting patient distress. Participants recognised the limitations of current lipodystrophy treatment options, yet a cure for the syndrome seemed less important to them in the short term than simply being listened to and the powerful, but oblique sources of distress addressed.

Justification for a new cohort study of people aging with and without HIV infection.

This supplement contains a series of papers supporting the justification, design, and implementation of a longitudinal cohort study of an aging HIV-positive and HIV-negative veteran population called the Veterans Aging Cohort Study (VACS). Although the papers cover a wide range of topics and several papers address methodologic issues not unique to a study of aging veterans, all are motivated by a unifying set of assumptions. Specifically: (a) HIV/AIDS is a chronic disease in an aging population; (b) conditions among HIV-positive and -negative patients in care have overlapping etiologies; (c) individuals with pre-existing organ injury are at increased risk for iatrogenic injury; (d) cohort studies are uniquely suited to the study of chronic disease complicated by aging, comorbid conditions, drug toxicities, and substance use/abuse; (e) VACS is well positioned to study HIV as a chronic disease in an aging population.

Development and validation of a self-completed HIV symptom index.

Traditional, open-ended provider questions regarding patient symptoms are insensitive. Better methods are needed to measure symptoms for clinical management, patient-oriented research, and adverse drug-event reporting. Our objective was to develop and initially validate a brief, self-reported HIV symptom index tailored to patients exposed to multidrug antiretroviral therapies and protease inhibitors, and to compare the new index to existing symptom measures. The research design was a multistage design including quantitative review of existing literature, qualitative and quantitative analyses of pilot data, and quantitative analyses of a prospective sample. Statistical analyses include frequencies, chi-square tests for significance, linear and logistic regression. The subjects were from a multisite convenience sample (n = 73) within the AIDS Clinical Trials Group and a prospective sample from the Cleveland Veterans Affairs Medical Center (n = 115). Measures were patient-reported symptoms and health-related quality of life, physician-assessed disease severity, CD4 cell count, and HIV-1 RNA viral quantification. A 20-item, self-completed HIV symptom index was developed based upon prior reports of symptom frequency and bother and expert opinion. When compared with prior measures the index included more frequent and bothersome symptoms, yet was easier to use (self-report rather than provider interview). The index required less than 5 minutes to complete, achieved excellent completion rates, and was thought comprehensive and comprehensible in a convenience sample. It was further tested in a prospective sample of patients and demonstrated strong associations with physical and mental health summary scores and with disease severity. These associations were independent of CD4 cell count and HIV-1 RNA viral quantification. This 20-item HIV symptom index has demonstrated construct validity, and offers a simple and rational approach to measuring HIV symptoms for clinical management, patient-oriented research, and adverse drug reporting.

Underuse of primary Mycobacterium avium complex and Pneumocystis carinii prophylaxis in the United States.

BACKGROUND: Little is known about the rates of Mycobacterium avium complex (MAC) and Pneumocystis carinii (PCP) prophylaxis adherence to guidelines and how they have changed after introduction of effective antiretroviral therapy. OBJECTIVE: To determine rates of primary prophylaxis for MAC and PCP and to evaluate the influence of sociodemographic characteristics, region, and provider experience. DESIGN: National probability sample cohort of HIV patients in care. SETTING: One hundred sixty HIV health care providers. PATIENTS: A total of 2864 patients interviewed in 1996 to 1997 (68% response) and 2267 follow-up interviews, representing 65% of surviving sampled patients (median follow-up, 15.1 months). MEASUREMENTS: Use of prophylactic drugs, most recent CD4 count, sociodemographics, and regional and total HIV patients/providers. RESULTS: Of patients eligible for primary MAC prophylaxis (most recent CD4 count <50/mm(3) ), 41% at baseline and 40% at follow-up patients were treated. Of patients eligible for primary PCP prophylaxis (i.e., those with CD4 counts <200/mm(3) ), 64% and 72% were treated, respectively. MAC prophylaxis at baseline was less likely in African American (adjusted odds ratio [OR], 35; 95% confidence interval [CI], 0.20-0.59), Hispanic (OR, 27; 95% CI, 0.08-0.94) and less-educated (OR, 0.61; 95% CI, 0.36-1.0) patients and more likely in U. S. geographic regions in the Pacific West (OR, 4.9; 95% CI, 1.0-23) and Midwest (OR, 6.4; 95% CI, 1.2-33) and in practices with more HIV patients. CONCLUSIONS: Most eligible patients did not receive MAC prophylaxis; PCP prophylaxis rates were better but still suboptimal. Our results support outreach efforts to African Americans, Hispanics, the less educated, and those in the northeastern United States and in practices with fewer HIV patients.

Barriers to use of electronic adherence monitoring in an HIV clinic.

OBJECTIVE: To evaluate barriers to Medication Event Monitoring System (MEMS) measurement of adherence to combination antiretroviral therapy in an HIV clinic. DESIGN: Descriptive, cross-sectional study measured MEMS adherence to one antiretroviral for one month. SETTING: HIV clinic in a Veterans Affairs Medical Center. PARTICIPANTS: Sixty-four men on a stable antiretroviral treatment regimen. MAIN OUTCOME MEASURES: Decanting (removing >1 dose at a time) before and during monitoring over a 30-day observation period was used to determine the qualitative impact of MEMS on adherence. The adherence index was the proportion of prescribed doses not missed. RESULTS: Subjects were primarily white (73%) with mean CD4+ count 408 cells/mm3, log viral load 1.81 copies/mL, and duration of antiretroviral therapy 5.5 years. Twenty-seven (42%) had some decanting routine established prior to monitoring; 12(44%) of these patients used daily decanters and 15(56%) used weekly pillboxes. Of those who decanted prior to the study, 10(37%) did not stop decanting during monitoring, 14 (52%) stopped decanting only the capped medication, and three (11%) stopped decanting all antiretrovirals. Other adherence strategies did not accommodate MEMS. Eight (13%) subjects said MEMS made adherence more difficult, six (9%) said MEMS was a reminder to adhere, and two (3%) mentioned both. Two subjects attributed skipped doses or time changes to the MEMS cap. The majority who refused to participate used pillboxes. CONCLUSIONS: Personal adherence strategies incompatible with MEMS are common in persons on complex treatment regimens. Although MEMS data on decanters underestimate adherence, excluding decanters erodes applicability of descriptive measures. MEMS use may have affected adherence behavior. Measures in conjunction with MEMS should include self-reported adherence and decanting assessment.

Changes in health-promoting behavior following diagnosis with HIV: prevalence and correlates in a national probability sample.

Diet, exercise, smoking, and substance use patterns affect the course of illness and quality of life for people with HIV. In interviews with a national probability sample of 2,864 persons receiving HIV care, it was found that most had made health-promoting changes in one or more of these behaviors since diagnosis. Many reported increased physical activity (43%) and improved diet (59%). Forty-nine percent of cigarette smokers quit or cut down; 80% of substance users did so. Desire for involvement in one's HIV care and information seeking-positive coping were the most consistent correlates of change. Other correlates varied by health practice but included health status, emotional well-being, demographics, and attitudes toward other aspects of HIV care. Most people with HIV improve their health behavior following diagnosis, but more might be helped to do so by targeting these behaviors in future interventions.

Measurement of fatigue in HIV-positive adults: reliability and validity of the Global Fatigue Index.

Fatigue is among the most common and distressing symptoms in patients with HIV/AIDS. Little is known about the clinical assessment of fatigue, especially in patients using highly active antiretroviral regimens. The purpose of this study was to evaluate the psychometric properties of the Global Fatigue Index (GFI) in a community-based sample of 209 patients with HIV/AIDS. The GFI is a measure that quantifies five dimensions of fatigue from the Multidimensional Assessment of Fatigue instrument into one score. To assess construct validity, the study included measures of depression, perceived stress, activities of daily living (ADLs), health behaviors, and clinical markers. Cronbach's alpha was calculated for internal consistency reliability, and factor analysis and bivariate correlations were conducted. The GFI was found to be easily self-administered, reliable, and a valid measure of overall fatigue burden in an HIV population. This instrument may be used by clinicians and researchers for assessing fatigue.

Evaluating HIV-infected patients with headache: who needs computed tomography?

OBJECTIVE: To empirically test a clinical prediction rule for evaluating HIV-infected patients complaining of headache and to identify those at low risk for intracranial mass lesion who do not need immediate computed tomography of the head. DESIGN: Two retrospective clinical cohorts of HIV-infected patients clinically evaluated for headache. METHODS: To describe the headache clinical outcomes, medical records were abstracted from all HIV-infected patients evaluated for headache with computed tomography of the head at two urban hospitals. Patients were categorized as low, intermediate, or high risk based on clinical criteria (focal neurological signs, altered mental status, history of seizure) and immune status (CD4 lymphocytes < or =200 microL). Records were abstracted from a second unselected cohort of HIV-infected outpatients with headache who were all treated and followed in primary care (N=101). RESULTS: Of 101 unselected HIV-infected outpatients followed in primary care after headache, 1% (95% confidence interval [CI], 0% to 6%) had a treatable intracranial lesion. Of 364 HIV-infected patients with headache sent for evaluation with computed tomography of the head, the rate of any abnormality was zero in the low-risk group (95% CI, 0% to 10%; n=35); 9% in the intermediate-risk group (95% CI, 2% to 16%; n=242); and 21% in the high-risk group (95% CI, 12% to 29%; n=87). CONCLUSION: Most HIV-infected patients with headache may be treated with analgesics and followed up clinically. Those without focal neurological signs, altered mental status, seizure, or decreased CD4 lymphocytes are unlikely to have intracranial mass lesions.

End-of-life discussions and preferences among persons with HIV.

CONTEXT: Deficits in advance care planning leave many patients and their physicians unprepared for decisions about end-of-life care. Even though the prognosis has improved for many persons with human immunodeficiency virus (HIV) infection, a need for planning remains. OBJECTIVE: To evaluate prevalence of end-of-life discussions, use of advance directives, and preferences concerning end-of-life care and their relationship with patient demographics, clinical status, psychosocial variables, and practitioner characteristics among HIV-infected persons. DESIGN, SETTING, AND PATIENTS: Cross-sectional survey of a US probability sample of 2864, which represents 231 400 adults receiving care for HIV, conducted from January 1996 to April 1997. MAIN OUTCOME MEASURES: Communication with physician regarding end-of-life issues, completion of an advance directive, preference for aggressiveness of care, and willingness to tolerate future permanent adverse health states. RESULTS: A total of 1432 patients (50%) discussed some aspect of end-of-life care with their practitioner and 1088 (38%) completed an advance directive. Patients were more likely to complete an advance directive after a physician discussion (odds ratio [OR], 5.82; 95% confidence interval [CI], 4.50-7.52). Practitioners discussed end-of-life care less with blacks (OR, 0.57; 95% CI, 0.39-0.83) and Latinos (OR, 0.74; 95% CI, 0.55-0.98) than with whites. Women (OR, 1.39; 95% CI, 1.05-1.84) and patients with children in the household (OR, 1.53; 95% CI, 1.12-2.10) communicated the most with practitioners about end-of-life issues. Patients infected with HIV via injection drug use (OR, 0.64; 95% CI, 0.45-0.89) and those with less education communicated the least with physicians about end-of-life issues. Less denial, greater trust in one's practitioner, and longer patient-practitioner relationship were associated with more advance care planning. CONCLUSIONS: Half of all persons infected with HIV are at risk of making end-of-life decisions without prior discussions with their health care practitioners. Blacks, Latinos, intravenous drug users, and less educated individuals need advance care planning interventions in clinical HIV programs.

Propensity of HIV patients to seek urgent and emergent care. HIV Cost and Services Utilization Study Consortium.

OBJECTIVE: To assess the propensity of HIV-infected adults to seek care for common symptoms, and to determine whether they would seek care in the emergency department (ED) or with their primary care provider. DESIGN: Cross-sectional interview study. SETTING: Patients in care in the 48 contiguous United States. PARTICIPANTS: A nationally representative group of HIV- infected adults selected using multistage probability sampling. MEASUREMENTS: Subjects were interviewed between January 1996 and April 1997. Patients with advanced disease (past AIDS diagnosis and/or CD4 cell count <200/microL) and early disease were asked how they would seek care for key HIV-associated symptom complexes. Three advanced disease and 3 early disease symptom scenarios were used. MAIN RESULTS: Most advanced disease patients (78% to 87%) would seek care right away from the ED or primary care provider for the symptoms asked. Most early disease patients (82%) would seek care right away for new respiratory symptoms; fewer would do so for headache (46%) or oral white patches (62%). In a multivariate model, independent predictors of propensity to use the ED for advanced disease symptoms included African-American ethnicity (adjusted odds ratio [OR], 2.5; 95% confidence interval [95% CI], 1.8 to 3.4); less education (adjusted OR, 1.4; 95% CI, 1.1 to 1.7); drug dependence (adjusted OR, 1.4; 95% CI, 1.1 to 1.7); annual income less than $5,000 (adjusted OR, 1.5; 95% CI, 1.0 to 2.3); and lower psychological well-being (adjusted OR, 0.9; 95% CI, 0.9 to 1.0). In early disease, the following independently predicted ED use: African American (adjusted OR, 4.7; 95% CI, 3.1 to 7.1) or Hispanic ethnicity (adjusted OR 2.4; 95% CI, 1.4 to 4.3), female gender (adjusted OR, 1.6; 95% CI, 1.2 to 2.2), annual income less than $5,000 (adjusted OR, 1.8; 95% CI, 1.1 to 3. 0), and lower psychological well-being (adjusted OR, 0.9; 95% CI, 0. 8 to 1.0). CONCLUSIONS: Many patients would use the ED instead of same-day primary care for several common symptoms of HIV disease. African Americans, the poor, and patients with psychological symptoms had a higher propensity to use the ED.

Self-reported adherence to antiretroviral medications among participants in HIV clinical trials: the AACTG adherence instruments. Patient Care Committee & Adherence Working Group of the Outcomes Committee of the Adult AIDS Clinical Trials Group (AACTG).

This paper describes the AACTG Adherence Instruments, which are comprised of two self-report questionnaires for use in clinical trials conducted by the Adult AIDS Clinical Trials Group (AACTG). The questionnaires were administered to 75 patients at ten AACTG sites in the USA. All patients were taking combination antiretroviral therapy (ART), including at least one protease inhibitor. Eleven per cent of patients reported missing at least one dose the day before the interview, and 17% reported missing at least one dose during the two days prior. The most common reasons for missing medications included 'simply forgot' (66%) and a number of factors often associated with improved health, including being busy (53%), away from home (57%) and changes in routine (51%). Less adherent patients reported lower adherence self-efficacy (p = 0.006) and were less sure of the link between non-adherence and the development of drug resistance (p = 0.009). They were also more likely to consume alcohol, to be employed outside the home for pay and to have enrolled in clinical trials to gain access to drugs (all p < 0.05). Twenty-two per cent of patients taking drugs requiring special instructions were unaware of these instructions. Each questionnaire took approximately ten minutes to complete. Responses to the questionnaires were favourable. These questionnaires have been included in six AACTG clinical trials to date and have been widely disseminated to investigators both in the USA and abroad.

National estimates of HIV-related symptom prevalence from the HIV Cost and Services Utilization Study.

OBJECTIVES: The objectives of this study were (1) to estimate the prevalence, bothersomeness, and variation of HIV-related symptoms in a nationally representative sample of HIV-infected adults receiving medical care and (2) to evaluate new aggregate measures of symptom frequency and bothersomeness. METHODS: Beginning in January 1996, 76% of a multistage national probability sample of 4,042 HIV-infected adults receiving medical care were interviewed. Participants endorsed the presence and degree of bothersomeness of 14 HIV-related symptoms during the preceding 6 months. Sex-standardized symptom number and bothersomeness indices were constructed. After sampling weights were incorporated, symptom distributions were compared according to selected characteristics by analysis of variance and multiple linear regression modeling. RESULTS: Prevalence of specific symptoms in the reference population was as follows: fever/night sweats, 51.1%; diarrhea, 51%; nausea/anorexia, 49.8%; dysesthesias, 48.9%; severe headache, 39.3%; weight loss, 37.1%; vaginal symptoms, 35.6% of women; sinus symptoms, 34.8%; eye trouble, 32.4%; cough/dyspnea, 30.4%; thrush, 27.3%; rash, 24.3%; oral pain, 24.1%; and Kaposi's sarcoma, 4%. Aggregate measures were reliable (Cronbach's alpha > or =0.75) and demonstrated construct validity when compared with other measures of disease severity. After adjustment for CD4 count, both symptom number and bothersomeness varied significantly (P <0.05) by teaching status of care setting, exposure/risk group, educational achievement, sex, annual income, employment, and insurance category. However, the magnitude of variation was small. Symptoms were greatest in women and injection drug users, as well as in persons with lower educational levels, lower income, and Medicare enrollment or those who were followed up at teaching hospitals. CONCLUSIONS: The prevalence and bothersomeness of HIV-related symptoms are substantial and vary by setting of care and patient characteristics.

Predictors of self-reported adherence and plasma HIV concentrations in patients on multidrug antiretroviral regimens.

BACKGROUND: Adherence to prescribed medications is a central feature of good clinical HIV care, but little is known about the factors associated with multidrug antiretroviral adherence, or about how such adherence is related to plasma HIV suppression. METHODS: We collected data from 133 HIV-infected adults receiving antiretroviral therapy. Study subjects completed customized adherence self-report instruments and provided blood samples to measure plasma HIV-1 RNA concentrations and CD4+ lymphocyte counts. Regression models were used to determine the independent predictors of antiretroviral adherence and plasma HIV concentration, and the relationships between the two. RESULTS: Adherence was poor (average, <80% antiretrovirals/day) in 28% (95% confidence interval [CI], 20%-36%), fair (80%-99% per day) in 23% (95% CI, 15%-30%), and excellent (100% per day) in 50% (95% CI, 41%-58%) of study subjects. Mean decreases in HIV-1 concentration from highest-ever levels were 1.3, 1.6, and 2.0 log10 copies/ml in these three groups, respectively (chi2; p < .02). Two-stage least squares regression demonstrated a -1.3 log difference in viral load associated with each category improvement in adherence. In multivariate models, confidence in medication-taking ability, or perceived self-efficacy, and convenience of the medication regimen, or "fit" with routine and daily activities, were also associated with greater medication adherence (odds ratios [OR] 5.3; 95% CI, 2.4-11.8, and 9.0; 95% CI, 1.8-45.3, respectively). The latter was also independently associated with a lower plasma HIV concentration (p < .02). CONCLUSIONS: Nonadherence to combination antiretroviral medications is common and is associated with increased levels of plasma HIV. Programs and clinical efforts to improve medication taking should strive to integrate medications better into patients' daily routines and to improve patients' confidence in their ability to take medications correctly.

Quality Enhancement Research Initiative for human immunodeficiency virus/acquired immunodeficiency syndrome: framework and plan. HIV-QUERI Executive Committee.

The Veterans Health Administration (VHA) sees approximately equal to 17,000 human immunodeficiency virus (HIV)-infected patients each year, which makes it the largest provider of HIV care in the United States. HIV causes chronic progressive disease that leads to early death. Newer combination antiretro viral treatments are effective but expensive and difficult to use. The HIV Quality Enhancement Research Initiative (HIV-QUERI) uses the QUERI process to identify high-risk and high-volume populations (step 1), which includes those already under VHA care for HIV, those who do not know of their infection, and those at risk for HIV. In identifying best practices (step 2), the HIV-QUERI will benefit greatly from existing guidelines for the care of established HIV infection, but gaps in knowledge regarding adherence to medication regimens and cost-effective screening are large. To identify existing practice patterns (step 3), the HIV-QUERI will develop a clean analytic data set based on Immunology Case Registry files and expand it through a survey of veterans. Interventions to improve care (step 4) will include national, regional, and site-specific feedback on performance relative to quality standards, as well as patient-level and provider-level interventions to improve adherence and support medical decision-making. To document that best practices improve outcomes and quality of life (steps 5 and 6), HIV-QUERI will track indicators on an ongoing basis by use of the Immunology Case Registry database and possible future waves of the survey. In addition, we will require that these issues be addressed in evaluations of HIV-QUERI interventions. In the present article, we present these steps within a framework and plan.

Self-management health education for chronic HIV infection.

This paper describes the design and implementation, and presents qualitative data on the Positive Self-Management Program (PSMP), a group health education programme to help patients actively participate in their HIV/AIDS disease and symptom management. PSMP design was guided by the needs and concerns of HIV patients and their caregivers, and by social cognitive theory. Programme participants meet weekly in interactive health education groups for seven sessions, and complete a structured curriculum that teaches self-management skills and information to patients: symptom assessment and management, medication use, physical exercise, relaxation, doctor-patient communication and nutrition. Each group was led by two trained peer-leaders (one HIV-positive). Structured, open-ended telephone interviews were conducted with a sample of PSMP participants during evaluation of the programme. Responses to PSMP were favourable, emphasizing the importance of the contracting process, group social support and the PSMP resource book provided. Subjects also described variation in HIV knowledge and experience among group participants, and emphasized the importance of changes in health-related attitudes and behaviours as a result of PSMP education. These results suggest that a self-management approach to HIV patient education is feasible and accepted, and could become a useful health education technique in patients with chronic HIV infection.

Pilot randomized trial of education to improve self-management skills of men with symptomatic HIV/AIDS.

OBJECTIVE: To evaluate the acceptability, practicality, and short-term efficacy of a health education program to improve disease self-management in patients with symptomatic HIV/AIDS. DESIGN: Randomized controlled trial, baseline and 3-month follow-up questionnaire assessments. SETTING: San Francisco Bay communities. PARTICIPANTS: Seventy-one men with symptomatic HIV or AIDS were randomly assigned to a seven-session group educational intervention (N=34) or a usual-care control group (N=37). INTERVENTION: Interactive health education groups were used to teach wide-ranging disease self-management skills and information: symptom assessment and management, medication use, physical exercise, relaxation, doctor-patient communication, and nutrition. Each group was led by two trained peer-leaders (one of whom was HIV-positive) recruited from the community. MAIN OUTCOME MEASURES: The primary outcome of interest was symptom status. Secondary outcomes were self-efficacy and health behaviors. Analysis of covariance was used to compare experimental and control group mean outcomes, adjusting for baseline value differences. RESULTS: The symptom severity index (number of symptoms moderate or greater severity) decreased in the experimental, and increased in the control group (-0.9 versus +0.5; p < .03). Pain, fatigue, and psychological symptoms were not significantly different between groups. Self-efficacy for controlling symptoms improved in the experimental, and decreased in the control group (+4 versus -7; p < .02). Changes in stress/relaxation exercises and HIV/AIDS knowledge were not different between groups. A trend was shown toward more frequent physical exercise in the experimental group compared with less in the control group (+1.3 versus -0.5 times/week; p=.06). CONCLUSIONS: Health education emphasizing self-management skills for HIV/AIDS patients can be implemented and evaluated and was accepted by patients, peer-leaders, and health care providers. Whether this educational program can lead to prolonged improvement in HIV symptoms and behaviors can be adequately addressed only by a larger trial of longer duration.

Preventive care among HIV-positive patients in a general medicine practice.

We randomly selected a cohort of human immunodeficiency virus (HIV)-positive patients from a large university-based general medicine practice to determine how often recommended disease prevention services are received. We used a standardized medical record review protocol to gather data from the records of 159 randomly selected HIV-positive adults followed in a university general medicine practice. We set 80% as the minimum acceptable rate of receipt of each recommended preventive service. Within three months of initiating HIV care, 88% of patients had CD4+ cell counts. Within six months, 75% had serology for syphilis, 64% had purified protein derivative tuberculin skin tests, 64% had hepatitis B serology, and 49% had pneumococcal vaccinations. Within one year, 33% had influenza vaccinations. Of 50 subjects eligible for Pneumocystis carinii prophylaxis (CD4+ cells < 200/mm3), 88% had started prophylaxis within six months. Of 56 subjects eligible for antiretroviral therapy (CD4+ cells < 500/mm3), 77% had started an antiretroviral within six months. Within one year, 22% of 23 subjects with documented nonimmunity to hepatitis B began hepatitis vaccination; only one subject completed the series of three vaccinations. Many HIV-positive patients did not receive appropriate screening tests for tuberculosis and syphilis or vaccinations for pneumococcal pneumonia, influenza, and hepatitis B. Patients did receive CD4+ cell counts, Pneumocystis carinii prophylaxis, and antiretroviral therapy at acceptable rates.