Cynthia R. Pearson

Self-Report Measures of Antiretroviral Therapy Adherence: A Review with Recommendations for HIV Research and Clinical Management

A review of 77 studies employing self-report measures of antiretroviral adherence published 1/1996 through 8/2004 revealed great variety in adherence assessment item content, format, and response options. Recall periods ranged from 2 to 365 days (mode=7 days). The most common cutoff for optimal adherence was 100% (21/48 studies, or 44%). In 27 of 34 recall periods (79%), self-reported adherence was associated with adherence as assessed with other indirect measures. Data from 57 of 67 recall periods (84%) indicated self-reported adherence was significantly associated with HIV-1 RNA viral load; in 16 of 26 (62%), it was associated with CD4 count. Clearly, the field would benefit from item standardization and a priori definitions and operationalizations of adherence. We conclude that even brief self-report measures of antiretroviral adherence can be robust, and recommend items and strategies for HIV research and clinical management.

Efficacy of interventions in improving highly active antiretroviral therapy adherence and HIV-1 RNA viral load. A meta-analytic review of randomized controlled trials.

Summary:Adherence to highly active antiretroviral therapy (HAART) is generally suboptimal, limiting the effectiveness of HAART. This meta-analytic review examined whether behavioral interventions addressing HAART adherence are successful in increasing the likelihood of a patient attaining 95% adherence or an undetectable HIV-1 RNA viral load (VL). We searched electronic databases from January 1996 to September 2005, consulted with experts in the field, and hand searched reference sections from relevant articles. Nineteen studies (with a total of 1839 participants) met the selection criteria of describing a randomized controlled trial among adults evaluating a behavioral intervention with HAART adherence or VL as an outcome. Random-effects models indicated that across studies, participants in the intervention arm were more likely than those in the control arm to achieve 95% adherence (odds ratio [OR] = 1.50, 95% confidence interval [CI]: 1.16 to 1.94); the effect was nearly significant for undetectable VL (OR = 1.25; 95% CI: 0.99 to 1.59). The intervention effect for 95% adherence was significantly stronger in studies that used recall periods of 2 weeks or 1 month (vs. ≤7 days). No other stratification variables (ie, study, sample, measurement, methodologic quality, intervention characteristics) moderated the intervention effect, but some potentially important factors were observed. In sum, various HAART adherence intervention strategies were shown to be successful, but more research is needed to identify the most efficacious intervention components and the best methods for implementing them in real-world settings with limited resources.

Peer support and pager messaging to promote antiretroviral modifying therapy in Seattle: a randomized controlled trial.

Objective:To determine the relative efficacy of peer support and pager messaging strategies versus usual care to improve medication adherence and clinical outcomes among HIV-positive outpatients initiating or switching to a new highly active antiretroviral therapy regimen. Design:A 2 × 2 factorial randomized controlled trial of a 3-month intervention with computer-assisted self-interviews and blood draws administered at baseline, 3, 6, and 9 months. Methods:HIV-positive patients at a public HIV specialty clinic in Seattle, WA (N = 224) were randomly assigned to peer support, pager messaging, both strategies, or usual care. The main outcomes were adherence according to self-report and electronic drug monitoring, CD4 count, and HIV-1 RNA viral load. Results:Intent-to-treat analyses suggested the peer intervention was associated with greater self-reported adherence at immediate postintervention. However, these effects were not maintained at follow-up assessment; nor were there significant differences in biological outcomes. The pager intervention, on the other hand, was not associated with greater adherence but was associated with improved biological outcomes at postintervention that were sustained at follow-up. Conclusions:Analyses indicate the potential efficacy of peer support and pager messaging to promote antiretroviral adherence and biological outcomes, respectively. More potent strategies still are needed.

Process and outcome constructs for evaluating community-based participatory research projects: a matrix of existing measures

Community-based participatory research (CBPR) has been widely used in public health research in the last decade as an approach to develop culturally centered interventions and collaborative research processes in which communities are directly involved in the construction and implementation of these interventions and in other application of findings. Little is known, however, about CBPR pathways of change and how these academic-community collaborations may contribute to successful outcomes. A new health CBPR conceptual model (Wallerstein N, Oetzel JG, Duran B et al. CBPR: What predicts outcomes? In: Minkler M, Wallerstein N (eds). Communication Based Participatory Research, 2nd edn. San Francisco, CA: John Wiley & Co., 2008) suggests that relationships between four components: context, group dynamics, the extent of community-centeredness in intervention and/or research design and the impact of these participatory processes on CBPR system change and health outcomes. This article seeks to identify instruments and measures in a comprehensive literature review that relates to these distinct components of the CBPR model and to present them in an organized and indexed format for researcher use. Specifically, 258 articles were identified in a review of CBPR (and related) literature from 2002 to 2008. Based on this review and from recommendations of a national advisory board, 46 CBPR instruments were identified and each was reviewed and coded using the CBPR logic model. The 46 instruments yielded 224 individual measures of characteristics in the CBPR model. While this study does not investigate the quality of the instruments, it does provide information about reliability and validity for specific measures. Group dynamics proved to have the largest number of identified measures, while context and CBPR system and health outcomes had the least. Consistent with other summaries of instruments, such as Granner and Sharpes inventory (Granner ML, Sharpe PA. Evaluating community coalition characteristics and functioning: a summary of measurement tools. Health Educ Res 2004; 19: 514-32), validity and reliability information were often lacking, and one or both were only available for 65 of the 224 measures. This summary of measures provides a place to start for new and continuing partnerships seeking to evaluate their progress.

Social support mediates the relationship between HIV stigma and depression/quality of life among people living with HIV in Beijing, China

Stigma towards people living with HIV is pervasive in China and related to poor service utilization, psychosocial distress and diminished quality of life (QOL). In an effort to identify mechanisms to reduce HIV stigma and its negative consequences, we examined whether social support mediates the relation between enacted stigma and both depressive symptoms and QOL among 120 HIV outpatients in Beijing, China. Generally, perceived social support was associated with less stigma, less depressive symptomatology and better QOL. Using multivariable regression models, we found that social support was a full mediator of the impact of stigma on both depressive symptomatology and QOL. The findings suggest social support may be an important target of interventions to reduce the impact of stigma on poor psychosocial health outcomes.

How qualitative methods contribute to understanding combination antiretroviral therapy adherence

Summary:Strict adherence to medication regimens is generally required to obtain optimal response to combination antiretroviral therapy (ART). Yet, we have made limited progress in developing strategies to decrease the prevalence of nonadherence. As we work to understand adherence in developed countries, the introduction of ART in resource-poor settings raises novel challenges. Qualitative research is a scientific approach that uses methods such as observation, interviews, and verbal interactions to gather rich in-depth information about how something is experienced. It seeks to understand the beliefs, values, and processes underlying behavioral patterns. Qualitative methods provide powerful tools for understanding adherence. Culture-specific influences, medication beliefs, access, stigma, reasons for nonadherence, patterns of medication taking, and intervention fidelity and measurement development are areas ripe for qualitative inquiry. A disregard for the social and cultural context of adherence or the imposition of adherence models inconsistent with local values and practices is likely to produce irrelevant or ineffective interventions. Qualitative methods remain underused in adherence research. We review appropriate qualitative methods for and provide an overview of the qualitative research on ART nonadherence. We discuss the rationales for using qualitative methods, present 2 case examples illustrating their use, and discuss possible institutional barriers to their acceptance.

Evaluating Community-Based Participatory Research to Improve Community-Partnered Science and Community Health

Background: Since 2007, the National Congress of American Indians (NCAI) Policy Research Center (PRC) has partnered with the Universities of New Mexico and Washington to study the science of community-based participatory research (CBPR). Our goal is to identify facilitators and barriers to effective community-academic partnerships in American Indian and other communities, which face health disparities.Objectives: We have described herein the scientific design of our National Institutes of Health (NIH)-funded study (2009-2013) and lessons learned by having a strong community partner leading the research efforts.Methods: The research team is implementing a mixed-methods study involving a survey of principal investigators (PIs) and partners across the nation and in-depth case studies of CBPR projects.Results: We present preliminary findings on methods and measures for community-engaged research and eight lessons learned thus far regarding partnership evaluation, advisory councils, historical trust, research capacity development of community partner, advocacy, honoring each other, messaging, and funding.Conclusions: Study methodologies and lessons learned can help community-academic research partnerships translate research in communities.

Chinese HIV-positive patients and their healthcare providers: contrasting Confucian versus Western notions of secrecy and support.

In this qualitative study, 29 HIV-positive, Chinese patients reported highly favorable impressions of their healthcare providers, who were seen as providing important medical-related, financial, and emotional support. Generally, the patient-provider relationship positively impacted the participants and their ability to maintain their health and was especially critical when patients were isolated from familial sources of support due to intense AIDS stigma. Often family members were informed of an HIV diagnosis before the patient, revealing tensions between Confucian principles of collectivism and familial authority and increasingly prevalent Western ideals of individual autonomy and the privileged status of personal health information.

Conceptualizing antiretroviral adherence in Beijing, China

Abstract International health experts agree that China is on the verge of an AIDS crisis. In response, the Chinese government initiated the “Four Frees and One Care” policy in 2003 to decrease economic barriers and increase access to antiretroviral therapies for people with HIV. However, long-term treatment success requires not only access, but high rates of medication adherence. This qualitative interview study with 29 persons receiving HIV care at Beijings Ditan Hospital identified barriers to and facilitators of medication adherence. The interviews were guided by an a priori conceptual model of adherence with four components: access, knowledge about medications, motivation, and proximal cues to action. Barriers to adherence were related to stigma and fear of discrimination; the medications themselves (including side-effects and complicated dosing regimens); and other economic issues (i.e. costs of transportation, lab tests and hospitalizations). Facilitators included participants’ strong will to live, use of electronic reminders and family support. These results support the conceptual model and suggest that successful interventions must minimize stigma as it negatively affects all components of the model for adherence.

Indian Boarding School Experience, Substance Use, and Mental Health among Urban Two-Spirit American Indian/Alaska Natives

Background: Systematic efforts of assimilation removed many Native children from their tribal communities and placed in non-Indian-run residential schools. Objectives: To explore substance use and mental health concerns among a community-based sample of 447 urban two-spirit American Indian/Alaska Native adults who had attended boarding school as children and/or who were raised by someone who attended boarding school. Method: Eighty-two respondents who had attended Indian boarding school as children were compared to respondents with no history of boarding school with respect to mental health and substance use. Results: Former boarding school attendees reported higher rates of current illicit drug use and living with alcohol use disorder, and were significantly more likely to have attempted suicide and experienced suicidal thoughts in their lifetime compared to non-attendees. About 39% of the sample had been raised by someone who attended boarding school. People raised by boarding school attendees were significantly more likely to have a general anxiety disorder, experience posttraumatic stress disorder symptoms, and have suicidal thoughts in their lifetime compared to others.