Characterizing Caregiver Roles and Conflict in Health Management Support to Older People With Multiple Chronic Conditions.

Caregivers provide critical support for older adults managing multiple chronic conditions (MCCs), but few studies describe the assistance caregivers provide or identify factors influencing their provision of support. We conducted qualitative interviews with 25 caregivers to older adults with MCCs to describe caregivers' roles and identify the factors that influence caregivers' ability to carry out these roles. Transcripts were analyzed using the Framework Method. Caregivers supported the management of MCCs in several ways, including monitoring conditions, communicating with clinicians, and tracking health information. Disagreement, or conflicted relationships, between caregivers and older adults over health and behaviors influenced the provision of support, resulting in less involved and less effective caregivers. Caregivers in conflicted relationships were more challenged by resistance from older adults. Greater agreement, or collaboration, between caregivers and older adults resulted in more involved and effective caregivers. Addressing health-related conflict may enhance caregivers' capacity to support older adults with MCCs.

LitCog Caregiver Cohort: a prospective, observational cohort study investigating US caregivers' health literacy, self-care skills and cognitive function.

INTRODUCTION: Many older adults receive assistance in managing chronic conditions. Yet complicating the utility of caregiver support is whether caregivers have sufficient skills to aid in a patient's self-care. Health literacy and cognition are important determinants of older adults' health outcomes, but few studies have examined caregiver health literacy, cognition and self-care skills and their relations to patient outcomes. METHODS AND ANALYSIS: We will expand an ongoing cognitive ageing cohort study (LitCog) to enroll a parallel caregiver cohort. Caregivers are eligible if they are (1) ≥18 years of age, (2) provided care for ≥6 months and (3) assisted with at least one activity of daily living, instrumental activity of daily living or health management task. Caregivers will complete interviews at time points corresponding with the LitCog participant interviews. Caregivers will complete assessments of health literacy, self-care skills, cognitive function, caregiver healthcare task difficulty, caregiver burden, caregiver self-efficacy, activation, technology use, busyness and routine and relationship quality. Caregivers will self-report the nature and intensity of care provided, and their own health status. Associations between caregiver presence and caregiver capacity with patient outcomes will be examined in a series of regression models, and mediating and moderating factors will be tested. ETHICS AND DISSEMINATION: The Institutional Review Board at Northwestern University has approved the study protocol (STU00026255). Results will be published in peer-reviewed journals and summaries will be provided to the funders of the study as well as patients and caregivers.

Primary care detection of cognitive impairment leveraging health and consumer technologies in underserved US communities: protocol for a pragmatic randomised controlled trial of the MyCog paradigm.

INTRODUCTION: Early identification of cognitive impairment (CI), including Alzheimer's disease and related dementias (ADRD), is a top public health priority. Yet, CI/ADRD is often undetected and underdiagnosed within primary care settings, and in health disparate populations. The MyCog paradigm is an iPad-based, self-administered, validated cognitive assessment based on the National Institutes of Health (NIH) Toolbox Cognition Battery and coupled with clinician decision-support tools that is specifically tailored for CI/ADRD detection within diverse, primary care settings. METHODS AND ANALYSIS: We will conduct a two-arm, primary care practice-randomised (N=24 practices; 45 257 active patients at the proposed practices), pragmatic trial among geographically diverse Oak Street Health sites to test the effectiveness of the MyCog paradigm to improve early detection CI/ADRD among low socioeconomic, black and Hispanic older adults compared with usual care. Participating practices randomised to the intervention arm will impart the MyCog paradigm as a new standard of care over a 3-year implementation period; as the cognitive component for Annual Wellness Visits and for any patient/informant-reported or healthcare provider-suspected cognitive concern. Rates of detected (cognitive test suggesting impairment) and/or diagnosed (relevant International Classification of Diseases-9/10 [ICD-9/10] code) cognitive deficits, impairments or dementias including ADRD will be our primary outcome of study compared between arms. Secondary outcomes will include ADRD severity (ie, mild or later stage), rates of cognitive-related referrals and rates of family member or caregiver involvement in ADRD care planning. We will use generalised linear mixed models to account for clustered study design. Secondary models will adjust for subject, clinic or visit-specific characteristics. We will use mixed-methods approaches to examine fidelity and cost-effectiveness of the MyCog paradigm. ETHICS AND DISSEMINATION: The Institutional Review Board at Advarra has approved the study protocol (Pro00064339). Results will be published in peer-reviewed journals and summaries will be provided to the funders of the study. TRIAL REGISTRATION NUMBER: NCT05607732.

Long-term impact of the COVID-19 pandemic on self-management of chronic conditions among high-risk adults in the USA: protocol for the C3 observational cohort study.

INTRODUCTION: COVID-19 is an unprecedented public health threat in modern times, especially for older adults or those with chronic illness. Beyond the threat of infection, the pandemic may also have longer-term impacts on mental and physical health. The COVID-19 & Chronic Conditions ('C3') study offers a unique opportunity to assess psychosocial and health/healthcare trajectories over 5 years among a diverse cohort of adults with comorbidities well-characterised from before the pandemic, at its onset, through multiple surges, vaccine rollouts and through the gradual easing of restrictions as society slowly returns to 'normal'. METHODS AND ANALYSIS: The C3 study is an extension of an ongoing longitudinal cohort study of 'high-risk' adults (aged 23-88 at baseline) with one or more chronic medical conditions during the COVID-19 pandemic. Five active studies with uniform data collection prior to COVID-19 were leveraged to establish the C3 cohort; 673 adults in Chicago were interviewed during the first week of the outbreak. The C3 cohort has since expanded to include 1044 participants across eight survey waves (T1-T8). Four additional survey waves (T9-T12) will be conducted via telephone interviews spaced 1 year apart and supplemented by electronic health record and pharmacy fill data, for a total of 5 years of data post pandemic onset. Measurement will include COVID-19-related attitudes/behaviours, mental health, social behaviour, lifestyle/health behaviours, healthcare use, chronic disease self-management and health outcomes. Mental health trajectories and associations with health behaviours/outcomes will be examined in a series of latent group and mixed effects modelling, while also examining mediating and moderating factors. ETHICS AND DISSEMINATION: This study was approved by Northwestern University's Feinberg School of Medicine Institutional Review Board (STU00215360). Results will be published in international peer-reviewed journals and summaries will be provided to the funders of the study.

Hazardous drinking by older adults with chronic conditions during the COVID-19 pandemic: Evidence from a Chicago-based cohort.

BACKGROUND: It is unclear how older adults with chronic conditions, who have greater risk of alcohol-related adverse outcomes, used alcohol throughout the COVID-19 pandemic. We assess changes in hazardous drinking prevalence May 2020-December 2021 and factors associated with hazardous drinking. METHODS: Data are from structured phone interviews of older adults (age 60+) with chronic conditions (e.g., hypertension, diabetes, pulmonary disease, heart disease) in a Chicago-based longitudinal cohort (Chicago COVID-19 Comorbidities survey, Waves 3-7, n = 247). We tested differences in the prevalence of hazardous drinking (defined as AUDIT-C score of 3+ for women and 4+ for men) across waves for the full sample, by demographic group (sex, race, and ethnicity), and by chronic condition burden (<3 conditions, 3+ conditions). Generalized estimating equations investigated associations of hazardous drinking with sociodemographic and pandemic coping-related factors (stress, loneliness, outside contacts, depression, anxiety). RESULTS: Participants were 66.8% female; 27.9% non-Hispanic Black, 14.2% Hispanic, 4.9% other race. Hazardous drinking was reported by 44.9% of participants in May 2020, but declined to 23.1% by July-August 2020 and continued to slowly decline to 19.4% by September-December 2021. Differences from May 2020 were significant at the 0.05 level. Subgroups followed similar trajectories. Hazardous drinking prevalence was initially higher but declined more among men than women, consistently higher among non-Hispanic White respondents than among Hispanic and non-Hispanic Black respondents, and declined more rapidly among adults with 3+ chronic conditions. In adjusted models, race and ethnicity were associated with lower prevalence of hazardous drinking (non-Hispanic Black: adjusted prevalence ratio [aPR] = 0.50, 95% confidence interval [CI] = 0.33, 0.74; other race: aPR = 0.26, 95% CI = 0.09, 0.81, compared with non-Hispanic White). No coping-related factors were significantly associated with hazardous drinking. CONCLUSION: Among a cohort of older adults with chronic conditions, almost half engaged in hazardous drinking in early summer of the COVID-19 pandemic. While prevalence fell, these rates reinforce the need for alcohol screening and intervention in clinical settings among this population.

Impact of COVID-19 on the capacity to self-manage health and chronic conditions.

Objective: To investigate well-being, lifestyle behaviors, self-management capacity and healthcare utilization among adults with chronic conditions at the outbreak of the COVID-19 pandemic. Methods: Data was collected from two interviewer-administered telephone surveys conducted between March 27 - May 22, 2020. Participants were patients at Chicago-area clinics. Self-report and validated measures were used for study-related outcomes. Results: A total of 553 participants (age range 23-88) completed data collection at both timepoints. One in five (20.7%) participants experienced stress due to the coronavirus most or all the time and rates of negative well-being were high (WHO-5 Index mean = 58.7%). Almost a quarter (22.3%) engaged in hazardous drinking and 79.7% reported insufficient physical activity. Nearly one in four participants (23.7%) avoided seeking medical care due to worry about COVID-19. In multivariable analyses, greater COVID-19 related stress was associated with less physical activity, lower self-efficacy, greater difficulty managing health and medications, and delays in seeking medical care due to the coronavirus. Conclusions: Mental well-being, lifestyle behaviors, self-management capacity, and healthcare utilization were impacted in the months following the COVID outbreak. Innovation: These findings suggest health systems should implement proactive measures for detecting and treating emotional and behavioral COVID-related concerns.

MidCog study: a prospective, observational cohort study investigating health literacy, self-management skills and cognitive function in middle-aged adults.

INTRODUCTION: The lack of definitive means to prevent or treat cognitive impairment or dementia is driving intense efforts to identify causal mechanisms. Recent evidence suggests clinically meaningful declines in cognition might present as early as middle age. Studying cognitive changes in middle adulthood could elucidate modifiable factors affecting later cognitive and health outcomes, yet few cognitive ageing studies include this age group. The purpose of the MidCog study is to begin investigations of less-studied and potentially modifiable midlife determinants of later life cognitive outcomes. METHODS AND ANALYSIS: MidCog is a prospective cohort study of adults ages 35-64, with two in-person interviews 2.5 years apart. Data will be collected from interviews, electronic health records and pharmacy fill data. Measurements will include health literacy, self-management skills, cognitive function, lifestyle and health behaviours, healthcare use, health status and chronic disease outcomes. Associations of health literacy and self-management skills with health behaviours and cognitive/health outcomes will be examined in a series of regression models, and moderating effects of modifiable psychosocial factors.Finally, MidCog data will be linked to an ongoing, parallel cohort study of older adults recruited at ages 55-74 in 2008 ('LitCog'; ages 70-90 in 2023), to explore associations between age, health literacy, self-management skills, chronic diseases, health status and cognitive function among adults ages 35-90. ETHICS AND DISSEMINATION: The Institutional Review Board at Northwestern University has approved the MidCog study protocol (STU00214736). Results will be published in peer-reviewed journals and summaries will be provided to the funders of the study as well as patients.

Trajectories of Sleep Disturbance and Self-Management of Chronic Conditions during COVID-19 among Middle-aged and Older Adults.

Background: The COVID-19 pandemic has had a widespread impact on sleep quality, yet little is known about the prevalence of sleep disturbance and its impact on self-management of chronic conditions during the ongoing pandemic. Objective: To evaluate trajectories of sleep disturbance, and their associations with one's capacity to self-manage chronic conditions. Design: A longitudinal cohort study linked to 3 active clinical trials and 2 cohort studies with 5 time points of sleep data collection (July 15, 2020 - May 23, 2022). Participants: Adults living with chronic conditions who completed sleep questionnaires for two or more time points. Exposure: Trajectories of self-reported sleep disturbance across 5 time points. Main Outcomes: 3 self-reported measures of self-management capacity, including subjective cognitive decline, medication adherence, and self-efficacy for managing chronic disease. Results: 549 adults aged 23 to 91 years were included in the analysis. Two thirds had 3 or more chronic conditions; 42.4% of participants followed a trajectory of moderate or high likelihood of persistent sleep disturbance across the study period. Moderate or high likelihood of sleep disturbance was associated with older age (RR 1.57, 95% CI 1.09, 2.26, P<.05), persistent stress (RR 1.54, 95% CI 1.16, 2.06, P=.003), poorer physical function (RR 1.57, 95% CI 1.17, 2.13, P=.003), greater anxiety (RR 1.40, 95% CI 1.04, 1.87, P=.03) and depression (RR 1.63, 95% CI 1.20, 2.22, P=.002). Moderate or high likelihood of sleep disturbance was also independently associated with subjective cognitive decline, poorer medication adherence, and worse self-efficacy for managing chronic diseases (all P<.001). Conclusions: Persistent sleep disturbance during the pandemic may be an important risk factor for inadequate chronic disease self-management and potentially poor health outcomes in adults living with chronic conditions. Public health and health system strategies might consider monitoring sleep quality in adults with chronic conditions to optimize health outcomes.

Caregiver health literacy and health task performance: Findings from the LitCog caregiver cohort study.

Objective: Many older adults receive assistance in managing their chronic conditions. Yet complicating the utility of caregiver support is whether caregivers have sufficient skills to aid in older adults' health management at home. We examined associations between caregiver health literacy and performance on health tasks. Methods: Caregivers to older adults enrolled in a cognitive aging cohort were recruited to participate in a supplemental interview (n = 97). Caregivers completed one structured interview that included assessments of health literacy and health task performance. Results: Caregivers demonstrated a range of health literacy skills (44% adequate, 36% marginal, 20% low health literacy). In adjusted analyses, caregivers with marginal and low health literacy demonstrated worse overall performance on the health tasks, and poorer interpretation of health information presented on print documents and recall of spoken communication (p's < 0.05). Conclusion: Caregivers with marginal or low health literacy demonstrated poorer performance on everyday health tasks that they commonly assist older adults with. The application of health literacy best-practices to support better training and capacity-building for caregivers is warranted. Innovation: Few studies have considered the health literacy skills of caregivers and its application to caregivers' abilities to carry out common supportive tasks.