Citations

Introduction: Little is known about the characteristics and resources that enable patients with heart failure (HF) to engage in effective self-management. To address this gap in knowledge, we measured personal and health care resources for self-management and examined associations with mortality among patients with HF. Methods: We surveyed 5543 residents of 11 counties in Southeast Minnesota with a first-ever code for HF [International Classification of Disease, Ninth Revision code 428 or Tenth Revision code I50] between 1/1/2013 and 3/31/2016. Self-management resources were measured with the health care and personal subscales of the Chronic Illness Resources Survey (CIRS), both of which included 3 questions on a 5-point scale. The responses were averaged and participants were categorized as low if the mean score was below the median of the distribution (range from 1 to 5). The survey was returned by 2866 participants (response rate 52%) and those with complete data on the main items of interest were retained for analysis (N=2212). Cox proportional hazards regression was used to determine the association between each subscale and mortality. Results: Among 2212 participants (mean age 72.8 years, 54.1% men) the median health care score was 4, while the personal score was 3. Those with low health care resources were older and less educated than those with a higher score (p<0.05), while those with low personal resources had less comorbidities and lower education attainment compared to those with a higher score (p<0.05). After a mean (SD) follow-up of 1.3 ± 0.6 years, 207 deaths occurred. Low levels of both self-management resources were associated with an increased risk of death compared with patients with high levels (Table). Conclusions: Having limited self-management resources is associated with an increased risk of mortality among patients with HF. Thus, interventions aimed at supporting self-management among patients with HF may improve outcomes.

Abstract Both family caregivers and providers report numerous challenges to providing care for of adults with Alzheimer’s disease and related dementias (AD/RD). Many of these challenges stem from ineffective communication and coordination within the health and support service networks, including: (1) communication challenges posed by AD/RD patients; (2) communication barriers between caregivers and providers; and (3) communication barriers among providers across institutions. Caregivers increasingly rely on technology to fill gaps in their knowledge, identify social support, and learn how to execute more complex care demands. While technology has been suggested as an effective strategy for improving the quality of AD/RD care and support caregivers, the role that public policy and research can and should play in advancing the goal of such tech-based solutions is still emerging. This is especially true in respect to how technology can strengthen care networks for patients and caregivers who are racial/ethnic minorities and/or living in rural communities. This presentation will identify the role that past legislation (e.g. the Affordable Care Act, HITECH, Medicaid) has played, as well as the role that recent and proposed legislation (e.g. RAISE Caregiver Act, CARE Act, 21st Century Cures Act, BOLD Infrastructure for Alzheimer’s Act, Older American’s Act reauthorization) should play in strengthening the health, support networks that caregivers interact with to provide ongoing care. This presentation will also summarize the current state of research on caregiver technologies and discusses how future research and policy initiatives can promote the translation of tech-based interventions into everyday care settings.

Abstract We sought to understand the comprehensiveness of consumer-oriented information describing the availability of shared access to adult patient portals from publicly reported information on institutional websites of 20 large and geographically diverse health systems. All 20 health systems reported that they offer patients the ability to share access to their patient portal account with a family member or friend; however, the comprehensiveness of information regarding registration procedures, features, and terminology varied widely. Half of the systems (n = 10) reported having shared access available on their patient portal registration webpage. Few systems (n = 2) reported affording patients the ability to differentiate specific role-based privileges. No systems reported uptake of shared access among adult patients, which was variably described as “proxy,” “caregiver,” “parental,” or “delegate” access. Findings suggest that engaging families through health information technology will require greater efforts to promote awareness and differentiate privileges that respect patients’ choice and control in information-sharing preferences.