Griffin, Joan M.

PURPOSE: Financial hardship (FH) in cancer care is a growing challenge for patients, their caregivers, and health care providers with impact on morbidity and mortality. In this study, we report on a standardized approach to describe the prevalence and predictors for FH as part of routine clinical workflow. We also report on the association of FH with survival in our cancer patient population. METHODS: This study includes patients who completed a FH screen at least once between 2018 and 2020. Demographics, disease state, and mortality data were extracted from the medical records. Multivariable logistic regression models were used to examine association of sociodemographic and disease variables with FH. By using propensity score weighting to account for differences in demographic and clinical factors between patients with and without FH, we then fit Cox proportional hazards models to examine the relationship between FH and survival. RESULTS: The study cohort included 31,154 patients. FH was reported by 14% (n = 4,250) of the patients. A significantly higher likelihood of having FH ( P < .001 for all) was reported by racial/ethnic minority patients; those who were unemployed/disabled, single, or divorced; patients from disadvantaged neighborhoods; and those who were self-pay or had government insurance. Older age, being retired, and living farther from the cancer center were associated with significantly less likelihood of endorsing FH. Patients who endorsed FH had a lower survival (hazard ratio for mortality 1.46). CONCLUSION: Our study identified key groups more likely to report FH in a relatively affluent population at a large cancer center and showed an adverse association between FH and survival. Further research is needed to develop clinical care pathways for patients at high risk for worse financial and clinical outcomes.

AbstractEpisodes of lucidity (ELs) in Alzheimer's disease and Alzheimer's disease‐related dementias (AD/ADRD), have garnered increasing attention as an important area of research. Efforts to study lucidity suffer from a lack of clear definitional criteria, inconsistent conceptualization, and diverse approaches to operationalizing features of these events. To advance systematic investigation of ELs in AD/ADRD, there is a need for clarity and precision in labeling event attributes, markers, and specific measurement strategies that enable operational harmonization across distinct approaches to investigating the relatively broad and nascent phenomenon. To that end, we propose a preliminary research framework to guide harmonization of approaches to investigating ELs in AD/ADRD. Our goal is to provide an initial schematic that encourages uniform labeling of operational decisions about ELs.

AbstractIntroductionLittle is known about how family caregivers who witness unexpected and spontaneous communication among people in late stages of Alzheimer's disease and related dementias (ADRD) appraise these episodes of lucidity (EL).MethodsIn an electronic, cross‐sectional survey for former and current caregivers who participate in UsAgainstAlzheimer's A‐LIST®, participants who reported witnessing an EL were asked how positive and stressful ELs were, if they made or changed decisions based on an EL, and what resources they sought out to explain ELs.ResultsCaregivers reported 72% of ELs to be quite a bit or very positive, 17% to be stressful, and 10% to be both stressful and positive. Twelve percent of caregivers changed care plans because of ELs and 13% sought out information about ELs.DiscussionThese exploratory data suggest caregiver reactions to EL vary. Caregivers may change or postpone care decisions due to EL, and few resources exist to address caregiver queries about EL.

Introduction Acute kidney injury (AKI) affects nearly 20% of all hospitalised patients and is associated with poor outcomes. Long-term complications can be partially attributed to gaps in kidney-focused care and education during transitions. Building capacity across the healthcare spectrum by engaging a broad network of multidisciplinary providers to facilitate optimal follow-up care represents an important mechanism to address this existing care gap. Key participants include nephrologists and primary care providers and in-depth study of each specialty’s approach to post-AKI care is essential to optimise care processes and healthcare delivery for AKI survivors. Methods and analysis This explanatory sequential mixed-methods study uses survey and interview methodology to assess nephrologist and primary care provider recommendations for post-AKI care, including KAMPS (kidney function assessment, awareness and education, medication review, blood pressure monitoring and sick day education) elements of follow-up, the role of multispecialty collaboration, and views on care process-specific and patient-specific factors influencing healthcare delivery. Nephrologists and primary care providers will be surveyed to assess recommendations and clinical decision-making in the context of post-AKI care. Descriptive statistics and the Pearson’s χ 2 or Fisher’s exact test will be used to compare results between groups. This will be followed by semistructured interviews to gather rich, qualitative data that explains and/or connects results from the quantitative survey. Both deductive analysis and inductive analysis will occur to identify and compare themes. Ethics and dissemination This study has been reviewed and deemed exempt by the Institutional Review Board at Mayo Clinic (IRB 20–0 08 793). The study was deemed exempt due to the sole use of survey and interview methodology. Results will be disseminated in presentations and manuscript form through peer-reviewed publication.

Background: Recent studies have suggested that patient activation, or having the knowledge, skills and confidence to manage one’s own health, has a substantial impact on patient behaviors and health outcomes. However, the role of activation in patients with heart failure is unknown. Methods: We prospectively recruited Southeastern Minnesota residents hospitalized with acute decompensated heart failure (ADHF) from January 2014 through July 2015. Activation was measured by face-to-face questionnaire using the Patient Activation Measure (PAM) and patients were categorized into four activation levels (lowest to highest activation) per PAM guidelines. Logistic regression was used to examine the association between activation level and discharge location and early post-discharge outcomes. Results: Among the 302 patients enrolled, the mean age was 77.3 years, 57.3% were men, and 46.8% had preserved ejection fraction. Median (25th-75th percentile) length of stay was 4 (3-7) days and 7 (2.3%) patients died prior to discharge. Among survivors, 73.3% discharged to home, while the remainder went to skilled nursing facilities (23.0%), assisted living facilities (2.0%) or other arrangements (1.4%). The 30-day mortality rate was 7.0% and the 30-day readmission rate was 21.2%. The number (%) of patients in each activation category from highest to lowest was 9 (3.0%), 121 (40.1%), 122 (40.4%), and 50 (16.6%). Patients with lower activation were older, less educated, had worse overall and financial satisfaction, and worse health literacy. They more often discharged to skilled nursing facilities and had higher 30-day mortality, though 30-day readmission did not differ by activation (Figure). Adjusting for age, patients in the lowest activation level were at 3.1-fold increased odds of discharging to a skilled nursing facility and 6.0-fold increased odds of dying within 30 days of hospital discharge compared with patients in the highest two activation levels. Conclusions: Patients hospitalized with ADHF with lower activation are less satisfied, have worse health literacy, more often require skilled care and are at increased risk for early post-discharge mortality. Activation is easy to measure, identifies a high-risk subgroup, and is potentially modifiable.

Abstract Objective To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty. Data Sources/Setting Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona. Study Design This was a qualitative study using data collected from one‐on‐one, semi‐structured interviews with physicians. Data Collection By using purposeful “maximum variation” sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach. Primary Findings Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available. Conclusions Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.