Exploring the Association of Metabolic Syndrome with In-Hospital Survival of Older Patients Hospitalized with COVID-19: Beyond Chronological Age.

BACKGROUND: Despite the variability and complexity of geriatric conditions, few COVID-19 reports of clinical characteristic prognostication provide data specific to oldest-old adults (over age 85), and instead generally report broadly as 65 and older. OBJECTIVE: To examine metabolic syndrome criteria in adults across 25 hospitals with variation in chronological age. DESIGN AND PARTICIPANTS: This cohort study examined 39,564 hospitalizations of patients aged 18 or older with COVID-19 who received inpatient care between March 13, 2020, and February 28, 2022. EXPOSURE: ICU admission and/or in-hospital mortality. MAIN MEASURES: Metabolic syndrome criteria and patient demographics were examined as risk factors. The main outcomes were admission to ICU and hospital mortality. KEY RESULTS: Oldest old patients (≥ 85 years) hospitalized with COVID-19 accounted for 7.0% (2758/39,564) of all adult hospitalizations. They had shorter ICU length of stay, similar overall hospitalization duration, and higher rates of discharge destinations providing healthcare services (i.e., home health, skilled nursing facility) compared to independent care. Chronic conditions varied by age group, with lower proportions of diabetes and uncontrolled diabetes in the oldest-old cohort compared with young-old (65-74 years) and middle-old (75-84 years) groups. Evaluations of the effect of metabolic syndrome and patient demographics (i.e., age, sex, race) on ICU admission demonstrate minimal change in the magnitude of effect for metabolic syndrome on ICU admission across the different models. CONCLUSIONS: Metabolic syndrome measures are important individual predictors of COVID-19 outcomes. Building on prior examinations that metabolic syndrome is associated with death and ARDS across all ages, this analysis supports that metabolic syndrome criteria may be more relevant than chronological age as risk factors for poor outcomes attributed to COVID-19.

The Technology in Caring Questionnaire: Development and Psychometric Properties.

OBJECTIVE: We developed the Technology in Caring Questionnaire (TCQ) to assess the use of technology-based strategies by dementia caregivers. METHODS: One hundred caregivers completed a survey that included TCQ items along with measures of technology proficiency and patient and caregiver-centered outcomes. RESULTS: The final 34-item TCQ scale had adequate to excellent internal consistency (raw Cronbach alpha = 0.75; standardized Cronbach alpha = 0.95; Guttman lambda-6 = 0.97). TCQ scores demonstrated modest convergent associations with scores from measures of smartphone ( r = 0.265, P < 0.01) and computer proficiency ( r = 0.230, P < 0.05) but a strong association with overall technology experience scores ( r = 0.578, P < 0.001). Elevated TCQ scores were associated with reduced informant-reported cognitive symptoms ( B = -0.003, P < 0.05), increased ability of caregivers to find support and information ( B = 0.03, P < 0.001), and increased direct care strain ( B = 0.03, P < 0.05), after controlling for dementia severity and demographics. CONCLUSION: The TCQ has good psychometric properties for the assessment of technology-based care strategies among dementia caregivers. Findings imply that the use of technologies may aid in symptom management and finding support and information but may also increase caregiver strain.

The dementia care study (D-CARE): Recruitment strategies and demographic characteristics of participants in a pragmatic randomized trial of dementia care.

INTRODUCTION: Pragmatic research studies that include diverse dyads of persons living with dementia (PLWD) and their family caregivers are rare. METHODS: Community-dwelling dyads were recruited for a pragmatic clinical trial evaluating three approaches to dementia care. Four clinical trial sites used shared and site-specific recruitment strategies to enroll health system patients. RESULTS: Electronic health record (EHR) queries of patients with a diagnosis of dementia and engagement of their clinicians were the main recruitment strategies. A total of 2176 dyads were enrolled, with 80% recruited after the onset of the pandemic. PLWD had a mean age of 80.6 years (SD 8.5), 58.4% were women, and 8.8% were Hispanic/Latino, and 11.9% were Black/African American. Caregivers were mostly children of the PLWD (46.5%) or spouses/partners (45.2%), 75.8% were women, 9.4% were Hispanic/Latino, and 11.6% were Black/African American. DISCUSSION: Health systems can successfully enroll diverse dyads in a pragmatic clinical trial.

Long-Term Care Market Trend and Patterns of Caregiving in the U.S.

Informal care is a major source of long-term services and supports (LTSS) for older adults in the U.S. However, the increasing gap between available family caregivers and those needing LTSS in coming years warrants better understanding of the balance between informal and formal home or community-based LTSS to meet the growing demand. The current study aimed to 1) identify patterns of informal and formal LTSS use among community-dwelling individuals, and 2) examine if the supply of formal LTSS predicts the use of informal care. These aims were investigated by linking the market supply of formal LTSS at the state-level to the Health and Retirement Survey data (N = 7,781). Results provide important empirical evidence that patterns of informal and formal LTSS use among older adults are heterogeneous and market supply of formal home and community-based services (HCBS) significantly predicts the use of informal care. Most older adults rely on informal care in combination with some formal supports, suggesting that the two systems work in tandem to meet the growing needs of LTSS. This offers important implications for states allocating resources to meet the LTSS needs of older adults and individuals with disabilities since states play key roles in U.S. long-term care policies.

Peer Support for Post Intensive Care Syndrome Self-Management (PS-PICS): Study protocol for peer mentor training.

AIMS: The primary aim of the Peer Support for Post Intensive Care Syndrome Self-Management (PS-PICS) peer mentor training trial is to determine the feasibility for peer mentor training to connect new ICU survivors with survivors who have made successful recoveries. Secondary aims are to also examine peer mentor eligibility, recruitment and retention rates and assess changes in participant knowledge of Post Intensive Care Syndrome (PICS), reported symptoms and health-related quality of life. DESIGN: Prospective clinical feasibility trial. METHODS: This study received funding from the National Institutes of Health funded P30 Center for Excellence (2014-2020). Up to 20 adult patients who have had an ICU stay of 3 days or longer more than 3 months ago will be enrolled into the study. Participants will undergo a 6-week peer mentor training program to learn how to promote healthy self-management behaviours, social connections, and well-being using motivational interviewing (MI). Participants will complete surveys about their recovery at 3 points during the study: prior to training, 6 weeks post-training and 3 months post-training. Survey questions will be used to assess trends in participant social isolation, depression, functional status, and self-management behaviours. DISCUSSION: Enrollment closes by December 2020. As a feasibility trial, power sufficient for hypothesis testing will not be available. However, study operations and intervention fidelity contribute to future research knowledge and participant characteristics and longitudinal outcomes will yield data on intervention feasibility. This study is the first use of embedding peer-led motivational interviewing training into a peer support intervention for ICU survivors. IMPACT: Current self-management interventions are limited for ICU survivors and do not sufficiently address barriers to promoting self-management behaviours or improving their health status, well-being and cost of health. This study will provide data to develop and implement interventions for the self-management of PICS-related symptoms and sequelae.

PITUITARY PARS INTERMEDIA DYSFUNCTION (EQUINE CUSHING'S DISEASE) IN NONDOMESTIC EQUIDS AT MARWELL WILDLIFE: A CASE SERIES. ONE CHAPMAN'S ZEBRA ( EQUUS QUAGGA CHAPMANI) AND FIVE PRZEWALSKI's HORSES ( EQUUS FERUS PRZEWALSKII).

Pituitary pars intermedia dysfunction (PPID), also known as equine Cushing's disease, is widely reported in middle-aged to older domestic equids but to date reported in only one nondomestic equid, the onager ( Equus hemionus onager). This case series reports clinical, hematological, and pathological findings consistent with PPID in two further equid species: one Chapman's zebra ( Equus quagga chapmani) and five Przewalski's horses ( Equus ferus przewalskii). The case series reports basal adrenocorticotropic hormone (ACTH) testing as a method to diagnose and monitor PPID in zoological equids and the use of pergolide mesylate to reduce basal ACTH concentration and reduce clinical signs associated with PPID. Gross and histopathological examinations of the pituitary gland in four of these cases revealed either pars intermedia adenomas or adenomatous hyperplasia, similar to pathological findings in domestic equids affected by PPID. These findings suggest that clinicians working with nondomestic equids should be aware of this condition and consider screening for it routinely, particularly given that improvements in management and veterinary care for exotic animals are resulting in a more aged captive population. Early diagnosis and treatment of PPID may prevent the development of painful clinical sequelae and therefore improve the welfare of zoo equids.

Socioecological factors and positive aspects of caregiving: findings from the REACH II intervention.

OBJECTIVE: Taking a socioecological perspective, this study assessed the relationship of intrapersonal, interpersonal, and organizational factors to positive aspects of caregiving (PAC) for 642 dementia caregivers by racial/ethnic group from the baseline data of the multisite Resources for Enhancing Alzheimer's Caregiver Health II (REACH II) intervention. METHODS: Nine intrapersonal indicators, 4 interpersonal indicators, and 12 organizational indicators were used. Blocked-multiple regression analyses by three racial/ethnic groups were computed to examine significant factors related to PAC among caregivers after controlling for memory and behavioral problems. RESULTS: Data showed a significant difference in PAC and significantly different indicators of PAC by racial/ethnic group. Hispanic caregivers reported the highest level of PAC while White participants showed the lowest scores on the measure of PAC. Education, marital status, and using formal transportation services were significant predictors for PAC among Hispanic caregivers; age, education, caregiving duration, and received social support were significant for PAC among African American caregivers; and sex, education, being a spousal caregiver, satisfaction with social support, using help from homemaker and visiting nurse services, and participating in support groups were significant among White caregivers. CONCLUSION: Findings indicate that PAC varies significantly across the three studied racial/ethnic groups of family caregivers and that intrapersonal, interpersonal, and organizational factors relate uniquely to PAC. Additional investigations of PAC could serve an important role in the development of family caregiving supports and services.

Increasing the Availability of Physical Activity Programs for Older Adults: Lessons Learned From Texercise Stakeholders.

Many initiatives have been developed to facilitate older adults' engagement in physical activity (PA) and document its benefits. One example is Texercise, a 12-week program with a focus on increasing participants' self-efficacy. The goal of this paper is to augment the knowledgebase of PA program implementation and dissemination by elucidating the experience of Texercise implementation as perceived by multiple stakeholders. We conducted 28 semistructured stakeholder interviews and categorized the responses into four preset themes: (1) program delivery and advocacy; (2) value/merit of the program; (3) successes/challenges of offering and sustaining the program; and (4) recommendations for enhancing implementation and delivery. We identified emergent subthemes through further analysis. Many perceptions that are broadly applicable to community organizations emerged. Our findings highlight the importance of stakeholder support when embedding PA programs in communities. Furthermore, the findings are crucial to understanding underlying processes that support widespread program dissemination and sustainability.

Texercise Effectiveness: Impacts on Physical Functioning and Quality of Life.

This study examines the effectiveness of Texercise Select, a 12-week lifestyle program to improve physical functioning (as measured by gait speed) and quality of life. Baseline and 12-week follow-up assessments were collected from 220 enrollees who were older (mean = 75 years), predominantly female (85%), White (82%), and experiencing multiple comorbidities (mean = 2.4). Linear mixed-models were fitted for continuous outcome variables and GEE models with logit link function for binary outcome variables. At baseline, over 52% of participants had Timed Up-and-Go (TUG) test times of 12 s or more, which indicates below-normal performance. On average, participants showed significant reductions in TUG test scores at the postintervention (11% reduction, p < .001). Participants also showed significant improvements in general health status (p = .002), unhealthy physical days (p = .032), combined unhealthy physical and mental days (p = .006), and days limited from usual activity (p = .045). Findings suggest that performance indicators can be objectively collected and integrated into evaluation designs of community-based, activity-rich lifestyle programs.

Imaging chronic traumatic brain injury as a risk factor for neurodegeneration.

Population-based studies have supported the hypothesis that a positive history of traumatic brain injury (TBI) is associated with an increased incidence of neurological disease and psychiatric comorbidities, including chronic traumatic encephalopathy, Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis. These epidemiologic studies, however, do not offer a clear definition of that risk, and leave unanswered the bounding criteria for greater lifetime risk of neurodegeneration. Key factors that likely mediate the degree of risk of neurodegeneration include genetic factors, significant premorbid and comorbid medical history (e.g. depression, multiple head injuries and repetitive subconcussive impact to the brain, occupational risk, age at injury, and severity of brain injury). However, given the often-described concerns in self-report accuracy as it relates to history of multiple TBIs, low frequency of patient presentation to a physician in the case of mild brain injuries, and challenges with creating clear distinctions between injury severities, disentangling the true risk for neurodegeneration based solely on population-based studies will likely remain elusive. Given this reality, multiple modalities and approaches must be combined to characterize who are at risk so that appropriate interventions to alter progression of neurodegeneration can be evaluated. This article presents data from a study that highlights uses of neuroimaging and areas of needed research in the link between TBI and neurodegenerative disease.

Profile of Caregiving Activities and Association With Physical Health Among Dementia Spousal Caregivers.

Background and Objectives: This study aims to identify patterns of caregiving intensity and assess associations between caregiving intensity and multidimensional physical health indicators and health behaviors among spousal caregivers of persons with Alzheimer's disease and related dementia. Research Design and Methods: Using data from 152 spousal caregivers aged 65 and older, the intensity of their caregiving experience was measured as the number and frequency of health- and medical-related helping activities for their care recipient. Multidimensional health indicators included self-reported fatigue, sleep disturbance, physical functioning, pain interference, general health, and the number of chronic conditions from the electronic health records. Self-reported health promotion behaviors were assessed as health responsibility, physical activity, nutrition, interpersonal relations, and stress management. Results: Two distinct caregiving intensity patterns, high-intensity (37.5%) and low-intensity (62.5%) caregiving, were identified with cluster analysis. Caregivers in the high-intensity caregiving cluster reported feeling more tired (t = 2.25, p < .05), experiencing more sleep disturbance (t = 3.06, p < .01), and performing less physical activity (t = 2.05, p < .05) compared with caregivers in the low-intensity group. Discussion and Implications: Future studies are needed to develop effective interventions to address caregiving intensity and its consequences on the health of spousal caregivers of persons with dementia.

Hypnosis Intervention for Sleep Disturbances in Individuals with Mild Cognitive Impairment: A Randomized Pilot Study.

Poor sleep quality is highly prevalent among individuals with mild cognitive impairment (MCI). Further, poor sleep quality is associated with reduced quality of life, increased stress response, memory impairments, and progression to dementia among individuals with MCI. Pharmacological treatments for sleep have mixed efficacy and can lead to dependency. Therefore, alternatives to pharmacological treatments for improving sleep among individuals with MCI are needed. The present study reports on the feasibility of a non-pharmacological self-administered hypnosis intervention focused on sleep quality in adults with MCI. It was hypothesized that the hypnosis intervention program would be feasible and have acceptable levels of adherence to daily hypnosis practice. A two-armed randomized controlled pilot trial was conducted using a sample of 21 adults with MCI. Eligible participants were randomly assigned to listen to either hypnosis audio recordings or sham hypnosis recordings for five weeks. Program feasibility, program adherence, pain intensity, stress, and sleep quality were measured using a daily home practice log, questionnaires, and wrist actigraphy. The results found mid or higher levels of treatment satisfaction, ease of use, and perceived effectiveness at one-week follow-up, with participants in the hypnosis arm reporting greater perceived benefit. Adherence to assigned audio recordings and meetings were likewise within acceptable margins in both groups. No intervention-related adverse events were reported in either treatment condition. Significant improvements in sleep quality, sleep duration, and daytime sleepiness were found for the hypnosis intervention. The results of this study can be used to inform future research on the effects of hypnosis on sleep quality in adults with MCI.

Driving among individuals with chronic conditions: A systematic review of applied research using kinematic driving sensors.

BACKGROUND: Kinematic driving data studies are a novel methodology relevant to health care, but prior studies have considerable variance in their methods, populations, and findings suggesting a need for critical analysis and appraisal for feasibility and methodological guidelines. METHODS: We assessed kinematic driving studies of adults with chronic conditions for study feasibility, characteristics, and key findings, to generate recommendations for future study designs, and to identify promising directions for applications of kinematic driving data. PRISMA was used to guide the review and searches included PubMed, CINAHL, and Compendex. Of 379 abstract/titles screened, 49 full-text articles were reviewed, and 29 articles met inclusion criteria of analyzing trip-level kinematic driving data from adult drivers with chronic conditions. RESULTS: The predominant chronic conditions studied were Alzheimer's disease and related Dementias, obstructive sleep apnea, and diabetes mellitus. Study objectives included feasibility testing of kinematic driving data collection in the context of chronic conditions, comparisons of simulation with real-world kinematic driving behavior, assessments of driving behavior effects associated with chronic conditions, and prognostication or disease classification drawn from kinematic driving data. Across the studies, there was no consensus on devices, measures, or sampling parameters; however, studies showed evidence that driving behavior could reliably differentiate between adults with chronic conditions and healthy controls. CONCLUSIONS: Vehicle sensors can provide driver-specific measures relevant to clinical assessment and interventions. Using kinematic driving data to assess and address driving measures of individuals with multiple chronic conditions is positioned to amplify a functional outcome measure that matters to patients.

Needs of family caregivers of hospitalised adults with dementia during care transitions: a qualitative study in a US Department of Veterans Affairs Hospital.

OBJECTIVE: To identify the needs of caregivers of hospitalised adults with dementia in the hospital and during care transitions. DESIGN: Pragmatic qualitative inquiry with semi-structured interviews. SETTING: Michael E. DeBakey Veterans Affairs Medical Center in Houston, Texas, USA. PARTICIPANTS: 12 family caregivers (family member (n=11); friend (n=1)) and 15 health professionals (hospital medicine physicians (n=4), inpatient nurse case managers (n=2), social workers (n=4), outpatient geriatrics providers (n=2), a primary care provider (n=1), geriatric psychiatrists (n=2)) were interviewed. Caregivers were recruited while their care recipient was hospitalised and were interviewed at least 2 weeks after the care recipient was discharged from the hospital. Health professionals were eligible for the study if they provided care to patients with dementia in the inpatient or outpatient setting. RESULTS: Four recommendations emerged from the analysis: (1) engage caregivers as partners in the care team, (2) provide dementia-specific information and training, (3) connect caregivers to home and community-based services and (4) provide care navigation and support for the caregiver posthospitalisation. CONCLUSIONS: Hospital care transitions are challenging for caregivers of hospitalised adults living with dementia. Care transition interventions designed to support caregivers with tailored, dementia-specific information and services are needed.

Impact of a transitional care program for heart failure patients at Baylor Scott & White Health: a pilot study.

Heart failure is a chronic health condition characterized by complex symptom management and costly hospitalizations. Hospitalization for the treatment of heart failure symptoms is common; however, many hospitalizations are thought to be preventable with effective self-management. This study describes the small, pilot implementation of a new, interventional, self-management heart failure program, "Engagement in Heart Failure Care" (EHFC), developed to assist heart failure patients with the management of disease symptoms following discharge from an inpatient hospital stay. EHFC was designed to engage patients in managing their symptoms and coaching them in skills that enable them to access medical and supportive care services across community, clinic, and hospital settings to help address both their current and future needs. The results of this pilot study suggest that EHFC's coaching model may have positive benefits on key health and well-being indicators of the patients enrolled.

The impact of a nutrition counseling program on the use of hospital services for Meals on Wheels clients.

Home-delivered meals have shown considerable promise in overcoming nutritional challenges among homebound older adults facing food insecurity and the risk of diabetes, while nutrition counseling provides knowledge and skills for diabetes management. The purpose of this study was to identify the impact of a program combining nutrition counseling with home-delivered meals by examining the use of hospital services 6 months before and after participating in the program. This study included 1009 clients who are at risk for diabetes and who received home-delivered meals and nutrition counseling via Meals on Wheels in Fort Worth, Texas. Hospital service data were extracted from a regional claims database. Generalized linear models were performed to examine changes in use of hospital services 6 months before and after program participation. The mean number of emergency department visits and hospitalizations decreased from 0.69 to 0.50 (p < .001) and from 0.35 to 0.22 (p < .001), respectively. The findings of this study indicate that combining structured nutritional counseling with home-delivered meals may contribute to reducing healthcare use among older adults facing the challenges of diabetes and food insecurity.

The community-based LIVE WELL Initiative: Improving the lives of older adults.

A collaborative partnership among community-based organizations (CBOs) could strengthen local services and enhance the capacity of a community to provide services as well as meet the diverse needs of older adults. The United Way of Tarrant County developed the LIVE WELL Initiative, partnering with six CBOs to provide nine evidence-based or evidence-informed health interventions to improve the health and lower healthcare costs of vulnerable individuals at risk for poor health. The nine programs include specific target areas, such as falls prevention, chronic disease self-management, medication management, and diabetes screening and education. A total of 63,102 clients, nearly 70% of whom were older adults, were served through the Initiative. Significant improvements in self-reported health status were observed among served clients. The percentage of clients reporting self-rated health as good, very good, and excellent increased from 47.5% at baseline to 61.1% at follow-up assessment. The mean healthy days improved from 16.9 days at baseline to 20.6 days at follow-up assessment. Additional improvements in program-specific outcomes demonstrated significant impacts of targeted intervention focus among served clients by program. The findings of this study emphasize that the impact of a collaborative partnership with multiple CBOs could promote health and well-being for older adults.

Considerations When Designing and Implementing Pragmatic Clinical Trials That Include Older Hispanics.

Introduction: Pragmatic clinical trials (PCTs) are designed to connect researchers with clinicians to assess the real-world effectiveness and feasibility of interventions, treatments, or health care delivery strategies in routine practice. Within PCTs larger, more representative sampling is possible to improve the external validity of the research. Older adults from underrepresented groups can benefit from PCTs given their historically lower engagement in clinical research. The current article focuses on older Hispanic adults with Alzheimer disease and related dementias (ADRDs). Older Hispanic adults represent 19% of the US population and have a higher prevalence of ADRDs than Whites. We provide data from 2 PCTs about the recruitment of older Hispanics with ADRDs and discuss unique challenges associated with conducting PCTs and propose strategies to overcome challenges. Data and Methods: The first PCT outlined is the Patient Priorities Care for Hispanics with Dementia (PPC-HD) trial. PPC-HD is testing the feasibility of implementing a culturally adapted version of the Patient Priorities Care approach for older Hispanic adults with multiple chronic conditions and dementia. The second PCT is the Dementia Care (D-CARE) Study, which is a multisite pragmatic study comparing the effectiveness of a health care system-based approach and a community-based approach to dementia care to usual care in patients with ADRDs and their family caregivers. Lessons Learned and Recommendations for Future Studies: The lessons learned are summarized according to the various stakeholders that need to work together to effectively recruit diverse participants for PCTs: individuals, health care systems, research teams, and communities. Individual-level considerations include communication, priorities, and flexibility. Health care system-level considerations are grounded in 4 principles of Community-Based Participatory Research and include collaboration/partnership, available resources, priorities of the health care system, and sustainability. Research team-level considerations include team members, intentionality, and communication. Community-level considerations highlight the importance of partnerships, community members, and appropriate incentives. Discussion: PCTs provide a unique and potentially impactful opportunity to test interventions in real-world settings that must be culturally appropriate to reach underrepresented groups. Collectively, considering variables at multiple levels to address the needs of older adults with ADRDs is crucial, and the examples and suggestions provided in this report are a foundation for future research.

Examining sociodemographic correlates of opioid use, misuse, and use disorders in the All of Us Research Program.

BACKGROUND: The All of Us Research Program enrolls diverse US participants which provide a unique opportunity to better understand the problem of opioid use. This study aims to estimate the prevalence of opioid use and its association with sociodemographic characteristics from survey data and electronic health record (EHR). METHODS: A total of 214,206 participants were included in this study who competed survey modules and shared EHR data. Adjusted logistic regressions were used to explore the associations between sociodemographic characteristics and opioid use. RESULTS: The lifetime prevalence of street opioids was 4%, and the nonmedical use of prescription opioids was 9%. Men had higher odds of lifetime opioid use (aOR: 1.4 to 3.1) but reduced odds of current nonmedical use of prescription opioids (aOR: 0.6). Participants from other racial and ethnic groups were at reduced odds of lifetime use (aOR: 0.2 to 0.9) but increased odds of current use (aOR: 1.9 to 9.9) compared with non-Hispanic White participants. Foreign-born participants were at reduced risks of opioid use and diagnosed with opioid use disorders (OUD) compared with US-born participants (aOR: 0.36 to 0.67). Men, Younger, White, and US-born participants are more likely to have OUD. CONCLUSIONS: All of Us research data can be used as an indicator of national trends for monitoring the prevalence of receiving prescription opioids, diagnosis of OUD, and non-medical use of opioids in the US. The program employs a longitudinal design for routinely collecting health-related data including EHR data, that will contribute to the literature by providing important clinical information related to opioids over time. Additionally, this data will enhance the estimates of the prevalence of OUD among diverse populations, including groups that are underrepresented in the national survey data.

Demographic differences in willingness to share electronic health records in the All of Us Research Program.

OBJECTIVE: Participant willingness to share electronic health record (EHR) information is central to success of the National Institutes of Health All of Us Research Program (AoURP). We describe the demographic characteristics of participants who decline access to their EHR data. MATERIALS AND METHODS: We included participants enrolling in AoURP between June 6, 2017 and December 31, 2019 through the Trans-American Consortium for the Health Care Systems Research Network (TACH). TACH is a consortium of health care systems spanning 6 states, and an AoURP research partner. RESULTS: We analyzed data for 25 852 participants (89.3% of those enrolled). Mean age = 52.0 years (SD 16.8), with 66.5% White, 18.7% Black/African American, 7.7% Hispanic, 32.5% female, and 76% with >a high school diploma. Overall, 2.3% of participants declined to share access to their EHR data (range across TACH sites = 1.3% to 3.5%). Younger age, female sex, and education >high school were significantly associated with decline to share EHR data, odds ratio (95% confidence interval) = 1.26 (1.19-1.33), 1.74 (1.42-2.14), and 2.44 (1.86-3.21), respectively. Results were similar when several sensitivity analyses were performed. DISCUSSION: AoURP seeks a dataset reflecting our nation's diversity in all aspects of participation. Those under-represented in biomedical research may be reluctant to share access to their EHR data. CONCLUSION: In our data, race and ethnicity were not independently related to participant decision to decline access to their EHR information. Results suggest that the value of the AoURP dataset is unlikely to be constrained by the size or the racial/ethnic composition of this subgroup.