Health literacy is known to affect vulnerable communities such as persons living with HIV/AIDS. The purpose of this review was to provide a current summary of research on the impact of health literacy on the health of persons living with HIV/AIDS and to address future areas of need. Contemporary studies focused on expanding the reach of health literacy in HIV/AIDS to retention in HIV care, use of technology for assessing and intervening to improve health literacy, and health literacy across the globe, for example. A number of studies did not find health literacy to explain health behaviors whereas other studies supported such a relationship. Future issues relevant to health literacy in HIV/AIDS include the aging of the HIV population and associated comorbidities, studies to understand the role of health literacy in specific populations affected by HIV/AIDS, and the continued need to refine the definition and measurement of health literacy.

Background: Despite the success of antiretroviral therapy (ART), HIV-infected older African Americans experience higher mortality rates compared to their white counterparts. This disparity may be partly attributable to the differences in ART adherence by different racial and gender groups. The purpose of this study was to describe demographic, psychosocial, and HIV disease-related factors that influence ART adherence and to determine whether race and gender impact ART adherence among HIV-infected adults aged 50 years and older. Methods: This descriptive study involved a secondary analysis of baseline data from 426 participants in "PRIME," a telephone-based ART adherence and quality-of-life intervention trial. Logistic regression was used to examine the association between independent variables and ART adherence. Results: Higher annual income and increased self-efficacy were associated with being ≥95% ART adherent. Race and gender were not associated with ART adherence. Conclusion: These findings indicated that improvements in self-efficacy for taking ART may be an effective strategy to improve adherence regardless of race or gender.

Purpose: The purpose of this article is to describe the outcomes of a collaborative initiative to share data across five schools of nursing in order to evaluate the feasibility of collecting common data elements (CDEs) and developing a common data repository to test hypotheses of interest to nursing scientists. This initiative extended work already completed by the National Institute of Nursing Research CDE Working Group that successfully identified CDEs related to symptoms and self-management, with the goal of supporting more complex, reproducible, and patient-focused research. Design: Two exemplars describing the group's efforts are presented. The first highlights a pilot study wherein data sets from various studies by the represented schools were collected retrospectively, and merging of the CDEs was attempted. The second exemplar describes the methods and results of an initiative at one school that utilized a prospective design for the collection and merging of CDEs. Methods: Methods for identifying a common symptom to be studied across schools and for collecting the data dictionaries for the related data elements are presented for the first exemplar. The processes for defining and comparing the concepts and acceptable values, and for evaluating the potential to combine and compare the data elements are also described. Presented next are the steps undertaken in the second exemplar to prospectively identify CDEs and establish the data dictionaries. Methods for common measurement and analysis strategies are included. Findings: Findings from the first exemplar indicated that without plans in place a priori to ensure the ability to combine and compare data from disparate sources, doing so retrospectively may not be possible, and as a result hypothesis testing across studies may be prohibited. Findings from the second exemplar, however, indicated that a plan developed prospectively to combine and compare data sets is feasible and conducive to merged hypothesis testing. Conclusions: Although challenges exist in combining CDEs across studies into a common data repository, a prospective, well-designed protocol for identifying, coding, and comparing CDEs is feasible and supports the development of a common data repository and the testing of important hypotheses to advance nursing science. Clinical Relevance: Incorporating CDEs across studies will increase sample size and improve data validity, reliability, transparency, and reproducibility, all of which will increase the scientific rigor of the study and the likelihood of impacting clinical practice and patient care.

Objective: Health literacy has been recognized as an important factor in patients' health status and outcomes, but the relative contribution of demographic variables, cognitive abilities, academic skills, and health knowledge to performance on tests of health literacy has not been as extensively explored. The purpose of this paper is to propose a model of health literacy as a composite of cognitive abilities, academic skills, and health knowledge (ASK model) and test its relation to measures of health literacy in a model that first takes demographic variables into account. Methods: A battery of cognitive, academic achievement, health knowledge and health literacy measures was administered to 359 Spanish- and English-speaking community-dwelling volunteers. The relations of health literacy tests to the model were evaluated using regression models. Results: Each health literacy test was related to elements of the model but variability existed across measures. Conclusion: Analyses partially support the ASK model defining health literacy as a composite of abilities, skills, and knowledge, although the relations of commonly used health literacy measures to each element of the model varied widely. Practice implications: Results suggest that clinicians and researchers should be aware of the abilities and skills assessed by health literacy measures when choosing a measure.

Background High levels of adherence to medications for HIV infection are essential for optimal clinical outcomes and to reduce viral transmission, but many patients do not achieve required levels. Clinician-delivered interventions can improve patients’ adherence, but usually require substantial effort by trained individuals and may not be widely available. Computer-delivered interventions can address this problem by reducing required staff time for delivery and by making the interventions widely available via the Internet. We previously developed a computer-delivered intervention designed to improve patients’ level of health literacy as a strategy to improve their HIV medication adherence. The intervention was shown to increase patients’ adherence, but it was not clear that the benefits resulting from the increase in adherence could justify the costs of developing and deploying the intervention. The purpose of this study was to evaluate the relation of development and deployment costs to the effectiveness of the intervention. Methods Costs of intervention development were drawn from accounting reports for the grant under which its development was supported, adjusted for costs primarily resulting from the project’s research purpose. Effectiveness of the intervention was drawn from results of the parent study. The relation of the intervention’s effects to changes in health status, expressed as utilities, was also evaluated in order to assess the net cost of the intervention in terms of quality adjusted life years (QALYs). Sensitivity analyses evaluated ranges of possible intervention effectiveness and durations of its effects, and costs were evaluated over several deployment scenarios. Results The intervention’s cost effectiveness depends largely on the number of persons using it and the duration of its effectiveness. Even with modest effects for a small number of patients the intervention was associated with net cost savings in some scenarios and for durations greater than three months and longer it was usually associated with a favorable cost per QALY. For intermediate and larger assumed effects and longer durations of intervention effectiveness, the intervention was associated with net cost savings. Conclusions Computer-delivered adherence interventions may be a cost-effective strategy to improve adherence in persons treated for HIV.

HIV-associated neurocognitive disorder (HAND) is a common condition in both developed and developing nations, but its cause is largely unknown. Previous research has inconsistently linked Alzheimer’s disease (AD), viral burden, and inflammation to the onset of HAND in HIV-infected individuals. Here we simultaneously measured cerebrospinal fluid (CSF) levels of established amyloid and tau biomarkers for AD, viral copy numbers, and six key cytokines in 41 HIV-infected individuals off combination anti-retroviral therapy (14 with HAND) who underwent detailed clinical and neuropsychological characterization, and compared their CSF patterns with those from young healthy subjects, older healthy subjects with normal cognition, and older people with AD. HAND was associated with the lowest CSF levels of phosphorylated tau (p-Tau181) after accounting for age and race. We also found very high CSF levels of the pro-inflammatory interferon gamma-induced protein 10 (IP-10/CXCL10) in HIV regardless of cognition, but elevated CSF interleukin 8 (IL-8/CXCL8) only in HIV-NC but not HAND. Eleven HIV-infected subjects underwent repeat CSF collection six months later and showed strongly correlated longitudinal changes in p-Tau181 and IL-8 levels (R = 0.841). These data suggest reduced IL-8 relative to IP-10 and reduced p-Tau181 to characterize HAND.

Background: Use of common data elements (CDEs), conceptually defined as variables that are operationalized and measured in identical ways across studies, enables comparison of data across studies in ways that would otherwise be impossible. Although healthcare researchers are increasingly using CDEs, there has been little systematic use of CDEs for symptom science. CDEs are especially important in symptom science because people experience common symptoms across a broad range of health and developmental states, and symptom management interventions may have common outcomes across populations. Purposes: The purposes of this article are to (a) recommend best practices for the use of CDEs for symptom science within and across centers; (b) evaluate the benefits and challenges associated with the use of CDEs for symptom science; (c) propose CDEs to be used in symptom science to serve as the basis for this emerging science; and (d) suggest implications and recommendations for future research and dissemination of CDEs for symptom science. Design: The National Institute of Nursing Research (NINR)-supported P20 and P30 Center directors applied published best practices, expert advice, and the literature to identify CDEs to be used across the centers to measure pain, sleep, fatigue, and affective and cognitive symptoms. Findings: We generated a minimum set of CDEs to measure symptoms. Conclusions: The CDEs identified through this process will be used across the NINR Centers and will facilitate comparison of symptoms across studies. We expect that additional symptom CDEs will be added and the list will be refined in future work. Clinical Relevance: Symptoms are an important focus of nursing care. Use of CDEs will facilitate research that will lead to better ways to assist people to manage their symptoms.

Medication adherence in persons treated for human immunodeficiency virus (HIV) continues to be an important focus for intervention. While high levels of adherence are required for good clinical outcomes, research shows many patients do not achieve these levels. Despite multiple interventions to improve adherence, most require multiple sessions delivered by trained clinicians. Cost and lack of trained personnel limit the availability of these interventions. Alternatives to clinician-delivered interventions are interventions provided via electronic devices (eg, personal/tablet computers and smartphones). Modern technology allows devices to provide tailoring of content to patient characteristics and learning needs, and to be excellent platforms to deliver multimedia teaching content. The intervention reported drew on research on health literacy in persons with HIV and the relation of health literacy to medication adherence in persons treated for HIV to develop an electronically delivered application. Using the Information–Motivation–Behavioral Skills model as a conceptual framework for understanding patients’ information needs, a computer-delivered intervention was developed, its usability and acceptability was assessed, and medication adherence in 118 patients for 1 month before and after they completed the intervention was evaluated. Changes in participant adherence were evaluated in sequential models with progressively lower levels of baseline medication adherence. Results show that although changes in adherence in the entire sample only approached statistical significance, individuals with adherence less than 95% showed significant increases in adherence over time. Participants’ self-reported knowledge and behavioral skills increased over the course of the study. Their change in information predicted their post-intervention adherence, suggesting a link between the intervention’s effects and outcomes. A computer-delivered intervention targeting HIV-related health literacy may thus be a useful strategy for improving patient adherence.

An evaluation of the effects of HIV infection on neurocognition over time is important for understanding disease progression. Changes in cognitive function can be evaluated longitudinally by using neuropsychological testing at repeated intervals. The assessment of change over time, however, is complicated by the potentially confounding influence of learning on repeated test administrations, often referred to as practice effect. In this study, we present data on testing of persons with or without HIV infection on a battery administered at study baseline and repeated 1 year later. Results suggest that practice effects may be diminished in persons with HIV infection compared to without it. This appears to be true even among those with relatively intact immune functioning as measured by CD4 count.

Healthcare workers commonly rely on patient self-report to identify problems with cognitive functioning among Persons Living with HIV (PLWH). Self-reported cognitive complaints may not accurately reflect objective cognitive performance and may be obscured by co-occurring depression. The purpose of the current study was to examine the relationships among depression, subjective cognitive complaints, and objective cognitive performance in PLWH using measures easily administered by healthcare workers. Particularly, this study assessed the association between subjective cognitive complaints (MOS-HIV) and objective cognitive performance (mHDS) using a simple screening tool, as well as whether depressive symptoms (CES-D 10) moderated this relationship. This was a secondary data analysis of a parent study that enrolled participants (N=207) from outpatient HIV clinics in Florida between 2009 and 2011. Most participants identified themselves as African American (82.6%) and heterosexual (81.6%). Almost half of the participants were male (46.4%). Fifty-one percent of participants had a score of 10 or greater on CES-D, indicating clinical depression. This study found no association between subjective and objective cognitive measures; depressive symptoms exhibited no moderating effect on the relationship between subjective cognitive complaints and objective cognitive performance. Depressive symptoms were significantly associated with subjective perceptions of cognitive ability. Results suggest that subjective cognitive complaints may be an inadequate tool for identifying objective cognitive impairments among PLWH. Additionally, treatment of depressive symptoms may help alleviate subjective cognitive complaints.