Enhancing the Impact of Mobile Health Literacy Interventions to Reduce Health Disparities.

Health literacy is a key factor in health outcomes that should be considered when creating mobile health promotion apps. In this paper, we detail our work over the past 10 years in developing the theory and practice of targeting the content of mobile apps at a level appropriate for the intended audience. We include a review of our theory of health literacy as expertise, the ASK model, and integrate it with the Theory of Planned Behavior. We then provide data that support both the model and its use. More recently, we have developed a predictive analytic model that uses demographic information and patient performance on a 10-item screening measure to determine patient level of health literacy at a high level of accuracy. The predictive model will enable apps to automatically provide content to users at an appropriate level of health literacy. This strategy, along with other aspects of tailoring, will allow apps to be more personally relevant to users, enhancing their effects in promoting health behavior change.

A mixed analysis approach to elucidate the multiple chronic condition experience of English- and Spanish-speaking older adults.

BACKGROUND: Having multiple chronic conditions (MCCs) is the most common health condition in older adults. The management of each condition presents many challenges. A key factor in patients' ability to manage their own health care is their level of health literacy. PURPOSE: The purpose of this mixed analysis study was to elucidate the experience of older adults living with MCCs and identify associations among the experiences to determine targets for future mobile health (mHealth) interventions focused on MCCs and health literacy. PARTICIPANTS AND METHODS: Using the Abilities, Skills, and Knowledge Model as a framework, semi-structured interviews were completed with 25 older adults in English and Spanish. Interviews were analyzed using inductive thematic analysis and hierarchical cluster analysis. RESULTS: The main themes from these results included 1) Reflections of chronic disease; 2) Emotional aspects of chronic disease; 3) Physical barriers to well-being; 4) Quality-of-care factors; and 5) Cognitive strategies for self-management. Qualitative results highlighted the importance of a multi-targeted approach to chronic disease self-management (CDSM). Cluster analysis identified associations within the qualitative data, revealing the importance of the subthemes related to coping with pain and the impact of the patient-provider relationship on treatment adherence. CONCLUSION: Results support the utility of mHealth interventions to improve health literacy and promote CDSM.

A qualitative study examining health literacy and chronic illness self-management in Hispanic and non-Hispanic older adults.

PURPOSE: Chronic illness and low levels of health literacy affect health outcomes for many individuals, particularly older adults and racial/ethnic minorities. This study sought to understand the knowledge, strengths, and areas of need regarding self-management of chronic illness in order to lay the groundwork for content development of an intervention to increase health literacy and maximize patient engagement in chronic disease self-care. PATIENTS AND METHODS: In-depth, qualitative interviews were conducted in Spanish and English with 25 older adults with various chronic illnesses. Topics included knowledge and understanding of chronic conditions, medications, and disease self-management skills. Qualitative data were coded by searching text and conducting cross-case analysis. An inductive analysis was then employed to allow for the patterns and themes to emerge. RESULTS: Emerged themes included 1) social support, 2) coping strategies, 3) spirituality, 4) chronic disease health literacy, 5) anger, and 6) depression. While participants had a general overall knowledge of chronic illness, they had deficits in knowledge regarding their own illnesses and medications. CONCLUSION: Chronic illness self-management is a complex and dynamic behavioral process. This study identified themes that leverage patient motivation to engage in self-care in a personalized manner. This information will guide the development of an intervention to promote health literacy and optimal disease self-management.

A Mobile App for Chronic Disease Self-Management: Protocol for a Randomized Controlled Trial.

BACKGROUND: Health literacy is a critically important skill that helps people become active participants in their health care. Multiple studies in the United States and across the world have documented the association of health literacy with multiple health outcomes. In particular, the elderly and many members of minority groups have been shown to have low levels of health literacy; the same groups are disproportionately affected by chronic illnesses. These twin burdens affect the people most in need of the skills and knowledge required for coping with chronic illnesses. Chronic disease self-management (CDSM) is a logical target for a general health literacy intervention. In an approach that spans across specific diseases, CDSM targets problems and skills needed to cope with issues such as fatigue, pain, stress, depression, sleep disturbance, and treatment adherence. In a previous study, we showed that a computer-delivered tailored information intervention targeting health literacy could improve treatment and adherence and be cost effective, but it is not clear that this same strategy will be effective in persons with low health literacy and multiple chronic conditions. OBJECTIVE: The purpose of this study is to develop a computer-delivered mobile intervention that will provide individuals with chronic conditions the necessary information to cope with their conditions. METHODS: In this project, we will complete a qualitative study on the status and needs of individuals with more than one chronic condition. Results of this study will be used to develop a mobile tailored information app that will address self-management challenges in the areas of pain, sleep, fatigue, depression, anger, stress, memory problems, and treatment adherence. The impact of the intervention on patient quality of life, patient-provider relationships, health literacy, and patient activation will be assessed. We will also explore the extent to which health literacy mediates important outcomes, such as health-related quality of life and health service utilization. RESULTS: We are currently completing the preliminary qualitative and usability studies that will inform the content and design of the intervention. We anticipate that the intervention will be complete in 2017, and the clinical trial of its efficacy will also commence in 2017. CONCLUSIONS: Results will provide evidence on the usefulness of a mobile tailored information app for improving health literacy, patient activation, health-related quality of life, and self-reported health in patients with multiple chronic conditions. TRIAL REGISTRATION: Clinicaltrials.gov NCT02922439; https://clinicaltrials.gov/ct2/show/NCT02922439 (Archived by WebCite at http://www.webcitation.org/6pTiqDAyN).

Evaluation of practice effect on neuropsychological measures among persons with and without HIV infection in northern India.

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.

A pilot study of cognitive training with and without transcranial direct current stimulation to improve cognition in older persons with HIV-related cognitive impairment.

BACKGROUND: In spite of treatment advances, HIV infection is associated with cognitive deficits. This is even more important as many persons with HIV infection age and experience age-related cognitive impairments. Both computer-based cognitive training and transcranial direct current stimulation (tDCS) have shown promise as interventions to improve cognitive function. In this study, we investigate the acceptability and efficacy of cognitive training with and without tDCS in older persons with HIV. PATIENTS AND METHODS: In this single-blind randomized study, participants were 14 individuals of whom 11 completed study procedures (mean age =51.5 years; nine men and two women) with HIV-related mild neurocognitive disorder. Participants completed a battery of neuropsychological and self-report measures and then six 20-minute cognitive training sessions while receiving either active or sham anodal tDCS over the left dorsolateral prefrontal cortex. After training, participants completed the same measures. Success of the blind and participant reactions were assessed during a final interview. Assessments were completed by an assessor blind to treatment assignment. Pre- and post-training changes were evaluated via analysis of covariance yielding estimates of effect size. RESULTS: All participants believed that they had been assigned to active treatment; nine of the 11 believed that the intervention had improved their cognitive functioning. Both participants who felt the intervention was ineffective were assigned to the sham condition. None of the planned tested interactions of time with treatment was significant, but 12 of 13 favored tDCS (P=0.08). All participants indicated that they would participate in similar studies in the future. CONCLUSION: Results show that both cognitive training via computer game playing and tDCS were well accepted by older persons with HIV infection. Results are suggestive that tDCS may improve cognitive function in persons with HIV infection. Further study of tDCS as an intervention for HIV-related cognitive dysfunction is warranted.

Health literacy predicts participant understanding of orally-presented informed consent information.

Informed consent for participation in studies with human subjects is a critically important aspect of clinical research, but research has shown that many potential subjects do not understand information relevant to their participation. A better understanding of factors related to participant understanding of study-related information is thus important. As part of a study to develop a new measure of health literacy, participants viewed a 50 second video in their preferred language (Spanish or English) of a clinician presenting informed consent information. They then responded to six questions about it. In progressively more complicated regression models, we evaluated the relation of demographic variables, general cognitive ability, and health literacy to participants' recall of the information. In a model that only included demographic variables, Spanish language, black race and older age were associated with poorer performance. In a model that included the effects of general cognitive ability and health literacy as well as demographics, education and health literacy were related to performance. Informed consent interventions that take potential research subjects' levels of health literacy into account may result in better understanding of research-related information that can inform their decision to participate.

Is the cloze procedure appropriate to evaluate health literacy in older individuals? Age effects in the test of functional health literacy in adults.

Health literacy has received increasing attention because of its importance for older individuals' health, as studies have shown a close relation between older individuals' health literacy and their health. Research also suggests that older individuals have low levels of health literacy, but this finding is variable and may depend on which health literacy test is used. Older individuals assessed with the Test of Functional Health Literacy (TOFHLA) score lower than younger individuals, but a previous study suggested that this may result from age-related differential item functioning (DIF) on the TOFHLA. The study reported here assessed age-related DIF in a sample of community-dwelling volunteers. Twenty-two percent of items were differentially more difficult for older individuals independent of their overall ability, and when these items were eliminated from the total score, age differences were no longer found. Performance on a working memory task predicted older but not younger individuals' performance on the age-related items. At least part of older individuals' apparent deficits in health literacy when assessed by the TOFHLA may be related to DIF on its items. The TOFHLA, and any measure that employs the cloze procedure to evaluate reading comprehension, should be used cautiously in older individuals.

Quality of life, health status, and health service utilization related to a new measure of health literacy: FLIGHT/VIDAS.

OBJECTIVE: Researchers have identified significant limitations in some currently used measures of health literacy. The purpose of this paper is to present data on the relation of health-related quality of life, health status, and health service utilization to performance on a new measure of health literacy in a nonpatient population. METHODS: The new measure was administered to 475 English- and Spanish-speaking community-dwelling volunteers along with existing measures of health literacy and assessments of health-related quality of life, health status, and healthcare service utilization. Relations among measures were assessed via correlations and health status and utilization was tested across levels of health literacy using ANCOVA models. RESULTS: The new health literacy measure is significantly related to existing measures of health literacy as well as to participants' health-related quality of life. Persons with lower levels of health literacy reported more health conditions, more frequent physical symptoms, and greater healthcare service utilization. CONCLUSION: The new measure of health literacy is valid and shows relations to measures of conceptually related constructs such as quality of life and health behaviors. PRACTICE IMPLICATIONS: FLIGHT/VIDAS may be useful to researchers and clinicians interested in a computer administered and scored measure of health literacy.

Evaluating different aspects of prospective memory in amnestic and nonamnestic mild cognitive impairment.

Prospective memory, the inability to remember an intended action, is a common complaint, but not formally assessed in most clinical and research studies of mild cognitive impairment (MCI). In this study, patients with amnestic mild cognitive impairment (aMCI), non-amnestic cognitive impairment (naMCI), and cognitively normal (CN) elders were assessed using the Miami Prospective Memory Test (MPMT). A unique aspect of the paradigm was that participants were scored for intention to perform, accuracy in recollection for specific elements of the task, and the need for reminder cues. Excellent test-retest stability was obtained for MPMT Event-Related (ER), combined Time-Related (TR) subscales, and total MPMT score for aMCI subjects. MPMT impairments were observed in 48.6% of aMCI, 29.4% of naMCI, and 10.0% of normal elderly participants. Prospective memory deficits were common in participants with aMCI, and occurred in almost a third of naMCI participants. Intention to perform and need for reminder cues were significantly more impaired than retrospective memory for specific details of the task. It is concluded that assessment of different elements of prospective memory is important in MCI research and that inability to remember intended actions is a significant feature in those as risk for Alzheimer's disease.

Abilities, skills and knowledge in measures of health literacy.

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.

Negative and positive beliefs related to mood and health.

OBJECTIVES: To observe whether elderly patients' positive and negative beliefs about efforts improving or maintaining health are related to health and mood. METHODS: We developed a brief scale to assess these beliefs. Factor analysis was used to evaluate its dimensions; the extent to which the scale's dimensions mediate the relationship between mood and self-reported health was explored. RESULTS: Analyses show that the scale reflects a general factor as well as 2 subscales that evaluate distinct but related positive and negative dimensions. The scale was not related to race, sex, or education, but showed modest relations to age. Scales were significantly related to mood, health status, and health-related quality of life. CONCLUSIONS: Both negative and positive beliefs mediated the relation between depression and self-reported health.

Subtypes of sleep problems in patients with Alzheimer disease.

OBJECTIVE: Sleep disturbances are common in patients with Alzheimer disease (AD) and can contribute to cognitive dysfunction and a negative impact on patients' and caregivers' quality of life. The purpose of this study was to evaluate whether subtypes of sleep disturbance could be identified in patients with AD and to assess the relation of these subtypes to patient characteristics and caregiver mood. METHODS: As part of routine clinical assessment, primary caregivers of 344 patients with AD completed a questionnaire that included five items about the patients' sleep. Patients' cognitive and functional status and their mood were assessed as was caregivers' mood. Latent class analysis was used to define subgroups of patients based on their sleep patterns. After identification of groups of sleep disturbance, the relation of group membership to patient and caregiver characteristics was also evaluated. RESULTS: Analyses revealed groups with moderate and severe sleep problems as well as a group without problems. Patients with more severe sleep disturbance were older, less well educated, and had poorer cognitive and functional status. Caregiver and patient depression was related to membership in the severe group, suggesting that both may contribute to caregivers' ratings of more severe sleep disturbance, whereas only patient depression was related to membership in the moderate group. CONCLUSION: Sleep problems in patients with AD are related to poorer cognitive and functional status and patient and caregiver depression. Caregiver depression was most closely related to more severe patient sleep disturbance.

An evaluation of deficits in semantic cueing and proactive and retroactive interference as early features of Alzheimer's disease.

OBJECTIVES: To determine the degree to which susceptibility to different types of semantic interference may reflect the initial manifestations of early Alzheimer's disease (AD) beyond the effects of global memory impairment. METHODS: Normal elderly (NE) subjects (n = 47), subjects with amnestic mild cognitive impairment (aMCI; n = 34), and subjects with probable AD (n = 40) were evaluated by using a unique cued recall paradigm that allowed for evaluation of both proactive and retroactive interference effects while controlling for global memory impairment (i.e., Loewenstein-Acevedo Scales of Semantic Interference and Learning [LASSI-L] procedure). RESULTS: Controlling for overall memory impairment, aMCI subjects had much greater proactive and retroactive interference effects than NE subjects. LASSI-L indices of learning by using cued recall revealed high levels of sensitivity and specificity, with an overall correct classification rate of 90%. These measures provided better discrimination than traditional neuropsychological measures of memory function. CONCLUSIONS: The LASSI-L paradigm is unique and unlike other assessments of memory in that items posed for cued recall are explicitly presented, and semantic interference and cueing effects can be assessed while controlling for initial level of memory impairment. This is a powerful procedure that allows the participant to serve as his or her own control. The high levels of discrimination between subjects with aMCI and normal cognition that exceeded traditional neuropsychological measures makes the LASSI-L worthy of further research in the detection of early AD.

Development and initial validation of a computer-administered health literacy assessment in Spanish and English: FLIGHT/VIDAS.

Current measures of health literacy have been criticized on a number of grounds, including use of a limited range of content, development on small and atypical patient groups, and poor psychometric characteristics. In this paper, we report the development and preliminary validation of a new computer-administered and -scored health literacy measure addressing these limitations. Items in the measure reflect a wide range of content related to health promotion and maintenance as well as care for diseases. The development process has focused on creating a measure that will be useful in both Spanish and English, while not requiring substantial time for clinician training and individual administration and scoring. The items incorporate several formats, including questions based on brief videos, which allow for the assessment of listening comprehension and the skills related to obtaining information on the Internet. In this paper, we report the interim analyses detailing the initial development and pilot testing of the items (phase 1 of the project) in groups of Spanish and English speakers. We then describe phase 2, which included a second round of testing of the items, in new groups of Spanish and English speakers, and evaluation of the new measure's reliability and validity in relation to other measures. Data are presented that show that four scales (general health literacy, numeracy, conceptual knowledge, and listening comprehension), developed through a process of item and factor analyses, have significant relations to existing measures of health literacy.

Cost effectiveness of a computer-delivered intervention to improve HIV medication adherence.

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. TRIAL REGISTRATION: Clinicaltrials.gov identifier NCT01304186.

Development and validation of a brief computer-administered HIV-Related Health Literacy Scale (HIV-HL).

Health literacy is related to a number of health status variables and has been associated with medication adherence in persons treated for HIV infection. Currently-available measures of health literacy require lengthy administration or have content or format limitations. In this paper we report the preliminary development and validation of a brief computer-administered health literacy test that includes content focused on medication adherence as well as questions based on a video simulation of an HIV-related clinical encounter. The measure shows significant relations with other measures of health literacy, HIV-related knowledge, and electronically-measured medication adherence. We also present receiver operating characteristic analyses that provide estimates of various scores' sensitivities and specificities so that the HIV-Related Health Literacy Scale can be used as a screening measure.

Volumetric and visual rating of magnetic resonance imaging scans in the diagnosis of amnestic mild cognitive impairment and Alzheimer's disease.

BACKGROUND: In the diagnosis of Alzheimer's disease (AD), structural magnetic resonance imaging (MRI) scans have been used primarily to exclude non-Alzheimer's causes of dementia. However, the pattern and the extent of medial temporal atrophy on structural MRI scans, which correlate strongly with the pathological severity of AD, can be used to support the diagnosis of a degenerative dementia, especially AD, even in its early predementia stage. METHODS: Elderly subjects (n = 224) were diagnosed with either no cognitive impairment (NCI), amnestic mild cognitive impairment (aMCI), or AD. Hippocampal and hemispheric gray matter volumes were measured on structural MRI scans, and a new visual rating system was used to score the severity of medial temporal atrophy (VRS-MTA) of the hippocampus (HPC), entorhinal cortex, and perirhinal cortex on a coronal image intersecting the mammillary bodies. RESULTS: Although both VRS-MTA scores and HPC volumes distinguished between subjects with NCI, aMCI, and AD, subjects with aMCI and NCI could be better distinguished using right VRS-MTA scores, in comparison with right HPC volumes. VRS-MTA scores were more highly correlated with episodic memory and Clinical Dementia Rating scores. A combination of left sided VRS-MTA scores and left sided hippocampal volume was the most predictive measure of diagnostic classification. CONCLUSION: VRS-MTA is a clinically convenient method or distinguishing aMCI or AD from NCI. As compared with volumetric measures, it provides better discriminatory power and correlates more strongly with memory and functional scores.

Caregiver reports of sleep problems in non-Hispanic white, Hispanic, and African American patients with Alzheimer dementia.

STUDY OBJECTIVES: Sleep problems are common in persons with dementing illnesses and among the most stressful patient behaviors for caregivers. Although studies have shown differences in sleep across ethnic groups, little information is available on ethnic differences among persons with dementia. The purpose of this study was to investigate possible ethnic differences in sleep problems among patients with Alzheimer dementia. METHOD: Caregiver reports of 5 sleep- or circadian rhythm-related behavioral problems (behavior disturbance worse in the evening, difficulties falling asleep, frequent awakenings, early awakenings, and excessive daytime sleep) were evaluated in 395 patients who had received a diagnosis of Alzheimer disease after diagnostic evaluation. The average cognitive score of the groups suggested that they could be characterized as having moderately severe impairment. The frequency of sleep problems was then evaluated across subgroups defined by self-reported ethnicity (African American, Hispanic, and non-Hispanic white). As patient and caregiver characteristics may affect caregivers' reports of patients' behaviors, mixed effects regression models were used to adjust for patient and caregiver variables that might affect caregiver reports. RESULTS: Analyses revealed ethnic differences in sleep or circadian rhythm disturbances. African American and Hispanic patients were reported to have more severe sleep disturbances than non-Hispanic whites. After correction for patient and caregiver variables that might have affected caregiver reports, differences between African Americans and others remained. CONCLUSIONS: Sleep problems in patients with dementing illnesses are reported by caregivers with differing frequencies across groups of African Americans, Hispanics, and non-Hispanic whites. Clinicians should be aware of these differences in assessing sleep disturbance in patients with dementia as well as the potential effects of patient and caregiver variables on reports of these problems.

Reliability and validity of an algorithm for the diagnosis of normal cognition, mild cognitive impairment, and dementia: implications for multicenter research studies.

BACKGROUND: The traditional consensus diagnosis (ConsDx) of normal cognition, mild cognitive impairment (MCI), and dementia relies on the reconciliation of an informant-based report of cognitive and functional impairment by a physician diagnosis (PhyDx), and a neuropsychological diagnosis (NPDx). As this procedure may be labor intensive and influenced by the philosophy and biases of a clinician, the diagnostic algorithm (AlgDx) was developed to identify individuals as cognitively normal, with MCI, or dementia. METHODS: The AlgDx combines the PhyDx with the NPDx, using a diagnostic algorithm that provides cognitive diagnoses, as defined by the National Alzheimer Coordinating Center/Uniform Data Set nomenclature. Reliability of the AlgDx was assessed in 532 community-dwelling elderly subjects by its concordance with the ConsDx and association with two biomarkers, medial temporal atrophy (MTA) scores of brain magnetic resonance imaging scans, and Apolipoprotein E (ApoE)-epsilon4 genotype. RESULTS: A high degree of concordance was observed between ConsDx and AlgDx with a weighted Cohen's kappa of 0.84. Concordance of the AlgDx to the same ConsDx categories ranged from 85% to 92%. Excellent discriminative validity was observed using AlgDx, MTA scores, and ApoE-epsilon4 allele frequencies, each of which distinguished subjects with amnestic MCI and dementia from normal subjects. CONCLUSION: The AlgDx of normal cognition, MCI, and dementia is a valid alternative that reduces time, effort, and biases associated with the ConsDx. The inherent reliability of a fixed algorithm, together with its efficiency and avoidance of individual bias, suggests the AlgDx may be used in longitudinal, multisite clinical trials, and population studies of MCI and dementia.