The association of health literacy with adherence and outcomes in moderate-severe asthma.

BACKGROUND: Low health literacy is associated with poor outcomes in asthma and other diseases, but the mechanisms governing this relationship are not well defined. OBJECTIVE: We sought to assess whether literacy is related to subsequent asthma self-management, measured as adherence to inhaled steroids, and asthma outcomes. METHODS: In a prospective longitudinal cohort study, numeric (Asthma Numeracy Questionnaire) and print literacy (Short Test of Functional Health Literacy in Adults) were assessed at baseline in adults with moderate or severe asthma for their impact on subsequent electronically monitored adherence and asthma outcomes (asthma control, asthma-related quality of life, and FEV1) over 26 weeks, using mixed-effects linear regression models. RESULTS: A total of 284 adults participated: age, 48 ± 14 years, 71% females, 70% African American, 6% Latino, mean FEV1 66% ± 19%, 86 (30%) with hospitalizations, and 148 (52%) with emergency department visits for asthma in the prior year. Mean Asthma Numeracy Questionnaire score was 2.3 ± 1.2 (range, 0-4); mean Short Test of Functional Health Literacy in Adults score was 31 ± 8 (range, 0-36). In unadjusted analyses, numeric and print literacy were associated with better adherence (P = .01 and P = .08, respectively), asthma control (P = .005 and P < .001, respectively), and quality of life (P < .001 and P < .001, respectively). After controlling for age, sex, and race/ethnicity, the associations diminished and only quality of life (numeric P = .03, print P = .006) and asthma control (print P = .005) remained significantly associated with literacy. Race/ethnicity, income, and educational attainment were correlated (P < .001). CONCLUSION: While the relationship between literacy and health is complex, interventions that account for and address the literacy needs of patients may improve asthma outcomes.

Feasibility, acceptability and preliminary effectiveness of patient advocates for improving asthma outcomes in adults.

BACKGROUND: Asthmatic adults from low-income urban neighborhoods have inferior health outcomes which in part may be due to barriers accessing care and with patient-provider communication. We adapted a patient advocate (PA) intervention to overcome these barriers. OBJECTIVE: To conduct a pilot study to assess feasibility, acceptability and preliminary evidence of effectiveness. METHODS: A prospective randomized design was employed with mixed methods evaluation. Adults with moderate or severe asthma were randomized to 16 weeks of PA or a minimal intervention (MI) comparison condition. The PA, a non-professional, modeled preparations for a medical visit, attended the visit and confirmed understanding. The PA facilitated scheduling, obtaining insurance coverage and overcoming barriers to implementing medical advice. Outcomes included electronically-monitored inhaled corticosteroid (ICS) adherence, asthma control, quality of life, FEV1, emergency department (ED) visits and hospitalizations. Mixed-effects models guided an intention-to-treat analysis. RESULTS: 100 adults participated: age 47 ± 14 years, 75% female, 71% African-American, 16% white, baseline FEV1 69% ± 18%, 36% experiencing hospitalizations and 56% ED visits for asthma in the prior year. Ninety-three subjects completed all visits; 36 of 53 PA-assigned had a PA visit. Adherence declined significantly in the control (p = 0.001) but not significantly in the PA group (p = 0.30). Both PA and MI groups demonstrated improved asthma control (p = 0.01 in both) and quality of life (p = 0.001, p = 0.004). Hospitalizations and ED visits for asthma did not differ between groups. The observed changes over time tended to favor the PA group, but this study was underpowered to detect differences between groups. CONCLUSION: The PA intervention was feasible and acceptable and demonstrated potential for improving asthma control and quality of life.

An analysis of contextual information relevant to medical care unexpectedly volunteered to researchers by asthma patients.

OBJECTIVE: To describe and categorize contextual information relevant to patients' medical care unexpectedly volunteered to research personnel as part of a patient advocate (PA) intervention to facilitate access health care, communication with medical personnel, and self-management of a chronic disease such as asthma. METHODS: We adapted a patient navigator intervention, to overcome barriers to access and communication for adults with moderate or severe asthma. Informed by focus groups of patients and providers, our PAs facilitated preparation for a visit with an asthma provider, attended the visit, confirmed understanding, and assisted with post-visit activities. During meetings with researchers, either for PA activities or for data collection, participants frequently volunteered personal and medical information relevant for achieving successful self-management that was not routinely shared with medical personnel. For this project, researchers journaled information not captured by the structured questionnaires and protocol. Using a qualitative analysis, we describe (1) researchers' journals of these unique communications; (2) their relevance for accomplishing self-management; (3) PAs' formal activities including teach-back, advocacy, and facilitating appointment making; and (4) observations of patients' interactions with the clinical practices. RESULTS: In 83 journals, patients' social support (83%), health (68%), and deportment (69%) were described. PA assistance with navigating the medical system (59%), teach-back (46%), and observed interactions with patient and medical staff (76%) were also journaled. Implicit were ways patients and practices could overcome barriers to access and communication. CONCLUSIONS: These journals describe the importance of seeking contextual and medically relevant information from all patients and, especially, those with significant morbidities, prompting patients for barriers to access to health care, and confirming understanding of medical information.

Problem solving to improve adherence and asthma outcomes in urban adults with moderate or severe asthma: a randomized controlled trial.

BACKGROUND: Improving inhaled corticosteroid (ICS) adherence should improve asthma outcomes. OBJECTIVE: In a randomized controlled trial we tested whether an individualized problem-solving (PS) intervention improves ICS adherence and asthma outcomes. METHODS: Adults with moderate or severe asthma from clinics serving urban neighborhoods were randomized to PS (ie, defining specific barriers to adherence, proposing/weighing solutions, trying the best, assessing, and revising) or standard asthma education (AE) for 3 months and then observed for 3 months. Adherence was monitored electronically. Outcomes included the following: asthma control, FEV(1), asthma-related quality of life, emergency department (ED) visits, and hospitalizations. In an intention-to-treat-analysis longitudinal models using random effects and regression were used. RESULTS: Three hundred thirty-three adults were randomized: 49 ± 14 years of age, 72% female, 68% African American, 7% Latino, mean FEV(1) of 66% ± 19%, and 103 (31%) with hospitalizations and 172 (52%) with ED visits for asthma in the prior year. There was no difference between groups in overall change in any outcome (P > .20). Mean adherence (61% ± 27%) decreased significantly (P = .0004) over time by 14% and 10% in the AE and PS groups, respectively. Asthma control improved overall by 15% (P = .002). In both groups FEV(1) and quality of life improved by 6% (P = .01) and 18% (P < .0001), respectively. However, the improvement in FEV(1) only occurred during monitoring but not subsequently after randomization. Rates of ED visits and hospitalizations did not significantly decrease over the study period. CONCLUSION: PS was not better than AE in improving adherence or asthma outcomes. However, monitoring ICS use with provision of medications and attention, which was imposed on both groups, was associated with improvement in FEV(1) and asthma control.

Clearing clinical barriers: enhancing social support using a patient navigator for asthma care.

BACKGROUND: Patients with moderate or severe asthma, particularly those who are minority or poor, often encounter significant personal, clinical practice, and health system barriers to accessing care. OBJECTIVE: To explore the ideas of patients and providers for potentially feasible, individualized, cost-effective ways to reduce obstacles to care by providing social support using a patient advocate or navigator. METHODS: The authors conducted four focus groups of adults with moderate or severe asthma. Participants were recruited from clinics serving low-income and minority urban neighborhoods. Data from these patient focus groups were shared with two additional focus groups, one of nurses and one of physicians. Researchers independently coded and agreed upon themes from all focus groups, which were categorized by types of social support: instrumental (physical aid), informational (educational), emotional (empathizing), validation (comparisons to others). RESULTS: Patients and providers agreed that a patient navigator could help patients manage asthma by giving social support. Both groups found instrumental and informational support most important. However, patients desired more instrumental help whereas providers focused on informational support. Physicians stressed review of medical information whereas patients wanted information to complete administrative tasks. Providers and patients agreed that the patient navigator's role in asthma would need to address both short-term care of exacerbations and enhance long-term chronic self-management by working with practice personnel. CONCLUSIONS: Along with medical information, there is a need for providers to connect patients to instrumental support relevant to acute and long-term asthma-self-management.

Alignment of Patient Health Numeracy with Asthma Care Instructions in the Patient Portal.

BACKGROUND: After Visit Summary (AVS) instructions provided through the patient portal of the electronic medical record can support asthma self-management if patients have the skills to interpret and apply the health information provided. Print literacy demands of patient materials are often higher than the reading ability of patients. However, less is known regarding the numeric demand of patient education materials and how well it aligns with patient health numeracy. OBJECTIVES: This study (1) developed measures of numeric demand for use in the AVS, (2) described the health numeracy demand of AVS instructions for asthma care, and (3) evaluated the association between numeracy demand of materials and patient health numeracy. METHODS: We reviewed personalized AVS instructions for an index visit from 74 adults with moderate or severe asthma recruited from clinics serving low-income urban communities. Using measures of numeric complexity and density developed for this study, numeracy demand of the AVS was compared to the numeracy skills of patients using the validated Asthma Numeracy Questionnaire. KEY RESULTS: The numeric complexity and density scales demonstrated content and face validity. The median (range) of the numeric complexity score for AVS instructions was 2.5 (0-46), and density of numeric information was 8% (0%-33%). The median (range) of the Asthma Numeracy Questionnaire was 2 (0-4). There was no association between patient asthma-related health numeracy and the complexity (p = .29) or density (p = .81) of numeric information. CONCLUSIONS: Patient instructions regarding medications and self-management often include numeric information. Lack of alignment of the numeracy demand of materials with health numeracy skill may be a barrier to communication, particularly among patients of lower health numeracy. [Health Literacy Research and Practice. 2017;1(1):e1-e10.]. PLAIN LANGUAGE SUMMARY: This study developed a way to measure the frequency and complexity of numeric information in instructions given to patients with asthma. No association was found between the difficulty of numeric information provided and the numeracy level of patients. This poses a potential barrier to communication, especially for patients with low health numeracy.

True "meaningful use": technology meets both patient and provider needs.

OBJECTIVES: Voluntary patient uptake and use of electronic health record (EHR) features have been low. It is unknown whether EHRs fully meet needs of providers or patients with chronic diseases. STUDY DESIGN: To explore in-depth user experiences, we conducted 6 focus groups: 3 of patients followed by 3 of providers discussing 2 key EHR components: the after-visit summary (AVS) and the patient portal (PP). Focus groups were audio-recorded, transcribed, and analyzed by 3 independent coders. METHODS: Participants with moderate-to-severe asthma and prevalent comorbidities were recruited from 4 primary care and 2 asthma clinics serving low-income urban neighborhoods. Participants discussed their expectations and experience using the AVS and PP, and responded to prototype formats of these features. Additionally, one-on-one interviews were conducted with 10 patients without PP experience to assess their ability to use the system. RESULTS: The 21 patient and 13 provider perspectives differed regarding AVS features and use. Patients wanted a unified view of their medical issues and health management tools, while providers wanted to focus on recommendations from 1 visit at a time. Both groups advocated improving the AVS format and content. Lack of awareness and knowledge about the PP was patients' largest barrier, and was traced back to providers' lack of PP training. CONCLUSIONS: Our results underscore the importance of user-centered design when constructing the content and features of the EHR. As technology evolves, an ongoing understanding of patient and provider experiences will be critical to improve uptake, increase use, and ensure engagement, optimizing the potential of EHRs.

Using IT to improve access, communication, and asthma in African American and Hispanic/Latino Adults: Rationale, design, and methods of a randomized controlled trial.

Asthma morbidity is high among inner-city minority adults. Improving access to care and patient-provider communication are believed to be essential for improving outcomes. Access and communication in turn increasingly rely on information technology including features of the Electronic Health Record. Its patient portal offers web-based communication with providers and practices. How patients with limited resources and educational opportunities can benefit from this portal is unclear. In contrast, home visits by community health workers (CHWs) have improved access to care for asthmatic children and promoted caretaker-clinician communication. We describe the planning, design, and methodology of an ongoing randomized controlled trial for 300 adults, predominantly African American and Hispanic/Latino, with uncontrolled asthma recruited from low income urban neighborhoods who are directed to the most convenient internet access and taught to use the portal, with and without home visits from a CHW. The study 1) compares the effects of the 1-year interventions on asthma outcomes (improved asthma control, quality of life; fewer ED visits and hospitalizations for asthma or any cause), 2) evaluates whether communication (portal use) and access (appointments made/kept) mediate the interventions' effects on asthma outcomes, and 3) investigates effect modification by literacy level, primary language, and convenience of internet access. In home visits, CHWs 1) train patients to competency in portal use, 2) enhance care coordination, 3) communicate the complex social circumstances of patients' lives to providers, and 4) compensate for differences in patients' health literacy skills. The practical challenges to design and implementation in the targeted population are presented.

"No other choice": reasons for emergency department utilization among urban adults with acute asthma.

OBJECTIVES: Asthma is considered "ambulatory care-sensitive," yet emergency department (ED) visits remain common. Few studies have examined how ED asthma patients choose their sites of urgent care. The authors explored reasons for asthma-related ED use among adults. METHODS: From May to September 2012, semistructured qualitative interviews were conducted with a convenience sample of patients visiting a high-volume urban ED for asthma. A piloted interview guide was used; it had open-ended questions derived from clinical experience and a focus group of asthmatic adults who frequently use the ED for care. Interviews were conducted until theme saturation was reached. Interview transcripts and field notes were entered into NVivo 10 and double-coded, using an iterative process to identify patterns of responses, ensure reliability, examine discrepancies, and achieve consensus through content analysis. RESULTS: Patients view their asthma symptoms in two categories: those they can manage at home and those requiring a provider's attention. Preferred site of acute asthma care varied, but most patients felt that they had little choice for acute exacerbations. Specific reasons for ED visits included wait times, acuity, insurance status, ED resources/expertise, lack of symptom improvement, lack of asthma medication, inability to access outpatient provider, referral by outpatient provider, and referral by friend or family member. CONCLUSIONS: Barriers to urgent outpatient care may contribute to ED use for asthma. Additionally, patients with asthma exacerbations may not recognize a need for provider attention until the need is urgent. Efforts to identify patients with acute asthma early and to increase access to urgent outpatient care may reduce asthma-related ED visits.