Griffin, Joan M.

AbstractINTRODUCTIONThis study examined lucid episodes among people living with late‐stage Alzheimer's disease and related dementias (PLWD) and then developed a typology of these episodes to help characterize them.METHODSFamily caregivers of PLWD provided information about witnessed episodes, including proximity to death, cognitive status, duration, communication quality, and circumstances prior to lucid episodes on up to two episodes (caregiver N = 151; episode N = 279). Latent class analysis was used to classify and characterize empirically distinct clusters of lucid episodes.RESULTSFour lucid episode types were identified. The most common type occurred during visits with family and among PLWD who lived > 6 months after the episode. The least common type coincided with family visits and occurred within 7 days of the PLWD's death.DISCUSSIONFindings suggest that multiple types of lucid episodes exist; not all signal impending death; and some, but not all, are precipitated by external stimuli.

AbstractBackgroundPhysical activity can improve the physical health of people living with mild cognitive impairment (MCI) and dementia and may have cognitive benefits. Identifying modifiable social factors inhibiting physical activity among this group is important. We examined the relationship between reported physical activity levels and social determinants of health (SDOH) in a population of older adults living with MCI or dementia.MethodWe included people with a diagnosis of MCI or dementia, age 55 years and older, who were empaneled to Community Internal Medicine at Mayo Clinic (Rochester, Minnesota), had a clinic visit between June 1, 2019 and June 30, 2021 and had completed a SDOH questionnaire. We focused on 8 SDOH domains: education, depression, alcohol use, stress, financial resource strain, social connections, food insecurity and transportation needs. Self‐reported activity levels were categorized as inactive (0 minutes of exercise per week), insufficiently active (10‐140 minutes per week) or sufficiently active (≥150 minutes per week). SDOH domains were compared according to physical activity level using χ2 tests and multinomial logistic regression.ResultA total of 3224 persons with MCI (n = 1371) or dementia (n = 1853) who had completed questions on physical activity were included. Of these, 1936 (60%) were characterized as physically inactive and 837 (26%) insufficiently active. Characteristics associated with an increased likelihood of physical inactivity were older age, female sex, obesity, lower education, dementia diagnosis, depression risk and increased social isolation (all p<0.001).ConclusionPhysical inactivity is common among people living with MCI and dementia. Physical activity levels may be influenced by many modifiable factors, highlighting potential areas for intervention in this population.

Abstract Lucid episodes (LE) occur in people living with dementia who have seemingly lost cognitive capacity. Understanding LEs is a relatively new area of scientific inquiry. Most LE studies have utilized different conceptual and operational definitions. Reaching a definition of LE is critical foundation to facilitate more systematic investigation and new knowledge of LEs. The goal of this study was to convene a group of 13 clinical experts to brainstorm on the key components needed to understand LE among people living with dementia (PLWD). We aimed to reach consensus from the group on (1) potential medical or clinical explanations for LEs; (2) necessary medical and clinical questions to understand LE; (3) interpretation of the presence of LE. Thirteen experts from different disciplines (neurology, psychiatry, psychology, pharmacy, palliative care, hospice, nursing, social work, primary care, geriatrics, and professional home caregivers) participated in a virtual Delphi Method study. Experts provided a range of opinions on potential medical and clinical explanations for LE, necessary questions to understand LE, and did not reach consensus on the presence of LE when presented with clinical vignettes. Panelists highlighted key medical and contextual factors as well as a need to know more information about the general demeanor and typical behavior of the PLWD to make a definitive judgement about whether LE occurred. Clinical consensus on LEs is complex. There is great variability in how behaviors and cognitive fluctuations in PLWD are appraised by clinical experts.

Abstract Lucid episodes (LE) in people living with late-stages of dementia (PLWD) have been reported anecdotally, but less is known about how this seemingly unexpected phenomenon is experienced by family members. This study aims to examine variability in family caregivers’ experiences with LE, focusing on the two most common groups of informal caregivers, spouses and children—whether they may exhibit differential appraisals of and responses to LEs. Using a sample of former and current family caregivers from UsAgainstAlzheimer’s A-LIST, we conducted an online survey to spouse and child caregivers (N = 387). Qualitative semi-structured interviews were also conducted with a subset of these caregivers who have witnessed an LE (n = 22). Survey results indicate that child caregivers were more likely to witness a LE. Among “former” caregivers who have witnessed a LE (n = 140), spouses were likely to appraise LEs more negatively and make changes in care decisions (i.e., end-of-life planning and financial decisions) after LE, compared to child caregivers. Among “current” caregivers who have witnessed a LE (n = 80), spouses were more likely to indicate no special circumstances prior to LE, whereas children were more likely to indicate LEs associated with visits from friends and family; there was no difference in positive and negative appraisals of LE between current spouse and child caregivers. Content analysis of qualitative interviews revealed that observed differences between spouses and children were related to their different caregiving contexts, such as relationship history, living arrangement, expectations/motivation, and care resources.

Trial RegistrationClinicalTrials.gov Identifier: NCT03501992

AbstractCancer and its treatment produce deleterious symptoms across the phases of care. Poorly controlled symptoms negatively affect quality of life and result in increased health-care needs and hospitalization. The Improving the Management of symPtoms during And following Cancer Treatment (IMPACT) Consortium was created to develop 3 large-scale, systematic symptom management systems, deployed through electronic health record platforms, and to test them in pragmatic, randomized, hybrid effectiveness and implementation trials. Here, we describe the IMPACT Consortium’s conceptual framework, its organizational components, and plans for evaluation. The study designs and lessons learned are highlighted in the context of disruptions related to the COVID-19 pandemic.

Abstract Background Electronic health record–linked portals may improve health-care quality for patients with cancer. Barriers to portal access and use undermine interventions that rely on portals to reduce cancer care disparities. This study examined portal access and persistence of portal use and associations with patient and structural factors before the implementation of 3 portal-based interventions within the Improving the Management of symPtoms during And following Cancer Treatment (IMPACT) Consortium. Methods Portal use data were extracted from electronic health records for the 12 months preceding intervention implementation. Sociodemographic factors, mode of accessing portals (web vs mobile), and number of clinical encounters before intervention implementation were also extracted. Rurality was derived using rural-urban commuting area codes. Broadband access was estimated using the 2015-2019 American Community Survey. Multiple logistic regression models tested the associations of these factors with portal access (ever accessed or never accessed) and persistence of portal use (accessed the portal ≤20 weeks vs ≥21 weeks in the 35-week study period). Results Of 28 942 eligible patients, 10 061 (35%) never accessed the portal. Male sex, membership in a racial and ethnic minority group, rural dwelling, not working, and limited broadband access were associated with lower odds of portal access. Younger age and more clinical encounters were associated with higher odds of portal access. Of those with portal access, 25% were persistent users. Using multiple modalities for portal access, being middle-aged, and having more clinical encounters were associated with persistent portal use. Conclusion Patient and structural factors affect portal access and use and may exacerbate disparities in electronic health record–based cancer symptom surveillance and management.

339 Background: Limited health insurance literacy (HIL) has been linked to problems paying medical bills or delaying care among patients with cancer. In this study, we describe the prevalence and correlates of HIL in a cohort of cancer patients measured using a ten-question HIL quiz developed by the Kaiser Family Foundation. Methods: We examined HIL in 393 adult patients (aged >18 years) receiving cancer treatment in two ambulatory infusion centers, Mayo Clinic in Phoenix, Arizona (12/2019 to 2/2020 and 8/2020 to 10/2020) and University of Mississippi Medical Center in Jackson, Mississippi (9/2020 to 1/2021). HIL was categorized as low, moderate, or high based on the total number of correct answers: 0-4 (low), 5-6 (moderate), and 7-10 (high). Descriptive statistics characterized the sample and chi-square statistics compared HIL by sociodemographic factors. Results: Most patients understood basic insurance terms, such as premiums and deductibles (Table). However, fewer patients answered questions correctly about provider networks (46.1%), formularies (48.6%), and calculating out-of-pocket (OOP) spending (16.8%). 53 (13.5%), 69 (17.6%), and 271 (69.0%) patients had low, moderate, and high HIL scores, respectively. Lower HIL was more common among patients of younger age (<65 years: 17.8%, 65+ years: 8.7%), lower educational attainment (less than college: 23.2%; college or higher: 4.4%), and lower household income (<$4999: 21.1%, $5000+: 6.1%) (all p-values<0.05). Conclusions: Although HIL in our cohort of cancer patients was relatively high - 69% answered at least 7 questions correctly - there were gaps in understanding of provider networks, formularies, and calculation of OOP spending. Efforts to improve HIL and help with navigation of health insurance plans may be required, especially for socioeconomically vulnerable patients.[Table: see text]

Health insurance literacy (HIL) constructs are related to financial toxicity in patients with cancer.

Introduction Advancements in vascularized composite allotransplantation have made hand transplants possible for persons living with upper limb loss. Hand transplantation is not a life-saving procedure, but rather a quality-of-life enhancing procedure; hence the risk of morbidity and mortality must be weighed against improvements in function and appearance. This study explored the decision-making process of patients evaluated for hand transplantation. Methods/Approach A qualitative case series study using retrospective chart data of evaluations was conducted between January 1, 2011 and February 28, 2020. Notes were extracted and read by three reviewers. Each case was summarized noting similarities and differences. Findings Nine patients underwent evaluation. Eight were no longer under evaluation and did not receive transplant; one was still undergoing evaluation. Patient motivations for evaluation were dissatisfaction with prostheses or self-image, chronic pain, performing activities of daily living, occupation, burden placed on caregivers, and concerns about overuse of non-affected limbs. Patients chose not to pursue transplantation due to rehabilitation time, immunosuppression, alternative treatments, and social and financial challenges. The clinical team discontinued evaluations due to unmet evaluation requirements, medical contraindications, or treatment alternatives. Different modes of shared decision-making were present depending on the party most heavily featured in the charts as driving decisions. Discussion This was an examination of shared decision-making with hand transplant candidates who did not proceed to transplant. Reasons for choosing alternative strategies for management were multifactorial. Lessons learned regarding patient motivations and shared decision-making can inform future interventions to better support patients.