Objective Evidence to date, while sparse, suggests that patients taking long-term opioids require special considerations and protections to prevent potential iatrogenic harms from opioid de-prescribing, such as increased pain or suffering. Following this study protocol, the EMPOWER study seeks to address multiple unmet needs of patients with chronic pain who desire to reduce long-term opioid therapy, and provide the clinical evidence on effective methodology. Methods EMPOWER applies patient-centered methods for voluntary prescription opioid reduction conducted within a comprehensive, multi-state, 3-arm randomized controlled comparative effectiveness study of three study arms (1) group cognitive behavioral therapy for chronic pain; (2) group chronic pain self-management; and (3) usual care (taper only). Specialized electronic data capture systems collect patient reported symptoms and satisfaction data weekly and monthly during the taper, with real-time clinical alerts and electronic feedback loops informing, documenting, and steering needed care actions. Conclusions The EMPOWER study seeks to provide granular evidence on patient response to voluntary opioid tapering, and will provide evidence to inform clinical systems changes, clinical care, patient satisfaction, and patient outcomes for opioid reduction.
Few interventions to improve asthma outcomes have targeted low-income minority adults. Even fewer have focused on the real-world practice where care is delivered. We adapted a patient navigator, here called a Patient Advocate (PA), a term preferred by patients, to facilitate and maintain access to chronic care for adults with moderate or severe asthma and prevalent co-morbidities recruited from clinics serving low-income urban neighborhoods. We describe the planning, design, methodology (informed by patient and provider focus groups), baseline results, and challenges of an ongoing randomized controlled trial of 312 adults of a PA intervention implemented in a variety of practices. The PA coaches, models, and assists participants with preparations for a visit with the asthma clinician; attends the visit with permission of participant and provider; and confirms participants’ understanding of what transpired at the visit. The PA facilitates scheduling, obtaining insurance coverage, overcoming patients’ unique social and administrative barriers to carrying out medical advice and transfer of information between providers and patients. PA activities are individualized, take account of comorbidities, and are generalizable to other chronic diseases. PAs are recent college graduates interested in health-related careers, research experience, working with patients, and generally have the same race/ethnicity distribution as potential participants. We test whether the PA intervention, compared to usual care, is associated with improved and sustained asthma control and other asthma outcomes (prednisone bursts, ED visits, hospitalizations, quality of life, FEV1) relative to baseline. Mediators and moderators of the PA-asthma outcome relationship are examined along with the intervention’s cost-effectiveness.
Research on asthma frequently recruits patients from clinics because the ready pool of patients leads to easy access to patients in office waiting areas, emergency departments, or hospital wards. Patients with other chronic conditions, and with mobility problems, face exposures at home that are not easily identified at the clinic. In this article, we describe the perspective of the community health workers and the challenges they encountered when making home visits while implementing a research intervention in a cohort of low-income, minority patients. From their observations, poor housing, often the result of poverty and lack of social resources, is the real elephant in the chronic asthma room. To achieve a goal of reduced asthma morbidity and mortality will require a first-hand understanding of the real-world social and economic barriers to optimal asthma management and the solutions to those barriers.
BACKGROUND Self-management of moderate/severe asthma depends upon patients’ ability to: 1) navigate (access health care to obtain diagnoses and treatment), 2) use inhaled corticosteroids (ICS) properly, and 3) understand ICS function. OBJECTIVE To test whether navigation skills (medication recall, knowledge of copay requirements ability to provide information needed for a medical visit about a persistent cough unresponsive to medication), are related to other self-management skills and to health literacy. METHODS A 21-item Navigating Ability (NAV2) questionnaire was developed, validated, then read to adults with moderate/severe asthma. ICS technique was evaluated by scales derived from instructions in national guidelines; knowledge of ICS function by a validated 10-item questionnaire. Spearman correlation was computed between NAV2 score and these questionnaires and with numeracy (Asthma Numeracy Questionnaire) and print literacy (Short Test of Functional Health Literacy in Adults). RESULTS 250 adults participated: age 51±13 years, 72% female, 65% African-American, 10% Latino, 50% with less than $30,000 household income per year, 47% with no more than a 12th grade education, 29% experienced hospitalizations for asthma in the prior year. Higher NAV2 score was associated with correct ICS technique (ρ=0.24, p=0.0002), knowledge of ICS (ρ =0.35, p<0.001), better print literacy (ρ=0.44, p<0.001) and numeracy (ρ=0.41, p<0.001). CONCLUSIONS Patients with poor navigating ability are likely to have poor inhaler technique and limited understanding of ICS function, as well as limited numeracy and print literacy. Clinicians should consider these elements of self-management for their impact on asthma care and as a marker of more general health literacy deficits.
Patients with chronic pain experience stigma within the healthcare system. This stigma is compounded for those taking long-term prescription opioids. Often, public messaging and organizational policies have telegraphed that opioid treatment is a problem to be solved by focusing only on medication reduction efforts. Lack of data has contributed to misperceptions and poor opioid policies. In part, data collection remains poor because patients feel fractured from systems of care and are often not interested in engaging with opioid reduction mandates and research. Similarly, clinicians may fail to engage with opioid stewardship and research due to complexities that exceed their training or capacities. The EMPOWER study applies a coproduction model that engages researchers, patients, clinicians, managers, and other health system users. Key stakeholders shaped the design of the study to best ensure acceptability and engagement of the “end users”—patients who enroll in the study and the clinicians who implement the opioid tapers. Targeting the needs of any stakeholder group in isolation is suboptimal. Accordingly, we detail the EMPOWER patient-centered opioid tapering clinical research framework and specific strategies to address stakeholder concerns. We also discuss how this framework may be applied to enhance engagement in healthcare research broadly.
Background: Asthma disproportionately affects low-income and minority adults. In an era of electronic records and Internetbased digital devices, it is unknown whether portals for patientprovider communication can improve asthma outcomes. Objective: We sought to estimate the effect on asthma outcomes of an intervention using home visits (HVs) by community health workers (CHWs) plus training in patient portals compared with usual care and portal training only. Methods: Three hundred one predominantly African American and Hispanic/Latino adults with uncontrolled asthma were recruited from primary care and asthma specialty practices serving low-income urban neighborhoods, directed to Internet access, and given portal training. Half were randomized to HVs over 6 months by CHWs to facilitate competency in portal use and promote care coordination. Results: One hundred seventy (56%) patients used the portal independently. Rates of portal activity did not differ between randomized groups. Asthma control and asthma-related quality of life improved in both groups over 1 year. Differences in improvements over time were greater for the HV group for all outcomes but reached conventional levels of statistical significance only for the yearly hospitalization rate (20.53; 95% CI, 21.08 to 20.024). Poor neighborhoods and living conditions plus limited Internet access were barriers for patients to complete the protocol and for CHWs to make HVs. Conclusion: For low-income adults with uncontrolled asthma, portal access and CHWs produced small incremental benefits. HVs with emphasis on self-management education might be necessary to facilitate patient-clinician communication and to improve asthma outcomes. (J Allergy Clin Immunol 2019;144:846-53.)
Background Exposure to fine particulate matter (PM2.5) increases the risk of asthma exacerbations, and thus, monitoring personal exposure to PM2.5 may aid in disease self-management. Low-cost, portable air pollution sensors offer a convenient way to measure personal pollution exposure directly and may improve personalized monitoring compared with traditional methods that rely on stationary monitoring stations. We aimed to understand whether adults with asthma would be willing to use personal sensors to monitor their exposure to air pollution and to assess the feasibility of using sensors to measure real-time PM2.5 exposure. Methods We conducted semi-structured interviews with 15 adults with asthma to understand their willingness to use a personal pollution sensor and their privacy preferences with regard to sensor data. Student research assistants used HabitatMap AirBeam devices to take PM2.5 measurements at 1-s intervals while walking in Philadelphia neighborhoods in May–August 2018. AirBeam PM2.5 measurements were compared to concurrent measurements taken by three nearby regulatory monitors. Results All interview participants stated that they would use a personal air pollution sensor, though the consensus was that devices should be small (watch- or palm-sized) and light. Patients were generally unconcerned about privacy or sharing their GPS location, with only two stating they would not share their GPS location under any circumstances. PM2.5 measurements were taken using AirBeam sensors on 34 walks that extended through five Philadelphia neighborhoods. The range of sensor PM2.5 measurements was 0.6–97.6 μg/mL (mean 6.8 μg/mL), compared to 0–22.6 μg/mL (mean 9.0 μg/mL) measured by nearby regulatory monitors. Compared to stationary measurements, which were only available as 1-h integrated averages at discrete monitoring sites, sensor measurements permitted characterization of fine-scale fluctuations in PM2.5 levels over time and space. Conclusions Patients were generally interested in using sensors to monitor their personal exposure to PM2.5 and willing to share personal sensor data with health care providers and researchers. Compared to traditional methods of personal exposure assessment, sensors captured personalized air quality information at higher spatiotemporal resolution. Improvements to currently available sensors, including more reliable Bluetooth connectivity, increased portability, and longer battery life would facilitate their use in a general patient population.
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