Analysis of agreement between measures of subjective cognitive impairment and probable dementia in the National Health and Aging Trends Study.

BACKGROUND: Subjective cognitive impairment (SCI) measures in population-based surveys offer potential for dementia surveillance, yet their validation against established dementia measures is lacking. METHODS: We assessed agreement between SCI and a validated probable dementia algorithm in a random one-third sample (n = 1936) of participants in the 2012 National Health and Aging Trends Study (NHATS). RESULTS: SCI was more prevalent than probable dementia (12.2% vs 8.4%). Agreement between measures was 90.0% and of substantial strength. Misclassification rates were higher among older and less-educated subgroups due to higher prevalence of false-positive misclassification but did not vary by sex or race and ethnicity. DISCUSSION: SCI sensitivity (63.4%) and specificity (92.5%) against dementia were comparable with similar metrics for the NHATS probable dementia measure against the "gold-standard" Aging, Demographics, and Memory Study-based dementia criteria, implying that population-based surveys may afford cost-effective opportunities for dementia surveillance to assess risk and inform policy. HIGHLIGHTS: The prevalence of subjective cognitive impairment (SCI) is generally higher than that of a validated measure of probable dementia, particularly within the youngest age group, females, Whites, and persons with a college or higher degree. Percent agreement between SCI and a validated measure of probable dementia was 90.0% and of substantial strength (prevalence- and bias-adjusted kappa, 0.80). Agreement rates were higher in older and less-educated subgroups, driven by the higher prevalence of false-positive disagreement, but did not vary significantly by sex or race and ethnicity. SCI's overall sensitivity and specificity were 63.4% and 92.5%, respectively, against a validated measure of probable dementia, suggesting utility as a low-cost option for dementia surveillance. Heterogeneity in agreement quality across subpopulations warrants caution in its use for subgroup analyses.

The Role of Place in Person- and Family-Oriented Long-Term Services and Supports.

Policy Points Little attention to date has been directed at examining how the long-term services and supports (LTSS) environmental context affects the health and well-being of older adults with disabilities. We develop a conceptual framework identifying environmental domains that contribute to LTSS use, care quality, and care experiences. We find the LTSS environment is highly associated with person-reported care experiences, but the direction of the relationship varies by domain; increased neighborhood social and economic deprivation are highly associated with experiencing adverse consequences due to unmet need, whereas availability and generosity of the health care and social services delivery environment are inversely associated with participation restrictions in valued activities. Policies targeting local and state-level LTSS-relevant environmental characteristics stand to improve the health and well-being of older adults with disabilities, particularly as it relates to adverse consequences due to unmet need and participation restrictions. CONTEXT: Long-term services and supports (LTSS) in the United States are characterized by their patchwork and unequal nature. The lack of generalizable person-reported information on LTSS care experiences connected to place of community residence has obscured our understanding of inequities and factors that may attenuate them. METHODS: We advance a conceptual framework of LTSS-relevant environmental domains, drawing on newly available data linkages from the 2015 National Health and Aging Trends Study to connect person-reported care experiences with public use spatial data. We assess relationships between LTSS-relevant environmental characteristic domains and person-reported care adverse consequences due to unmet need, participation restrictions, and subjective well-being for 2,411 older adults with disabilities and for key population subgroups by race, dementia, and Medicaid enrollment status. FINDINGS: We find the LTSS environment is highly associated with person-reported care experiences, but the direction of the relationship varies by domain. Measures of neighborhood social and economic deprivation (e.g., poverty, public assistance, social cohesion) are highly associated with experiencing adverse consequences due to unmet care needs. Measures of the health care and social services delivery environment (e.g., Medicaid Home and Community-Based Service Generosity, managed LTSS [MLTSS] presence, average direct care worker wage, availability of paid family leave) are inversely associated with experiencing participation restrictions in valued activities. Select measures of the built and natural environment (e.g., housing affordability) are associated with participation restrictions and lower subjective well-being. Observed relationships between measures of LTSS-relevant environmental characteristics and care experiences were generally held in directionality but were attenuated for key subpopulations. CONCLUSIONS: We present a framework and analyses describing the variable relationships between LTSS-relevant environmental factors and person-reported care experiences. LTSS-relevant environmental characteristics are differentially relevant to the care experiences of older adults with disabilities. Greater attention should be devoted to strengthening state- and community-based policies and practices that support aging in place.

The Application of Minimal Clinically Important Differences in Palliative Research: Interpretation of Results of a Systematic Review.

CONTEXT: Interpreting clinical meaningfulness of patient reported outcomes (PROs) in palliative care research is key in evidence-based practice. Minimal clinically important differences (MCIDs) can help interpret whether changes in PROs are meaningful to patients. OBJECTIVE: To examine use of MCIDs in a recent systematic review on integrating palliative care into ambulatory care for U.S. adults with noncancer serious chronic illness and their effect on interpretation of key PROs. METHODS: Paired investigators abstracted MCIDs for each PRO in the systematic review from PubMed, tool specific websites, and Google Scholar. Investigators compared findings and resolved differences through consensus. MCIDs were interpreted alongside results from meta-analyses or individual studies to draw conclusions on effectiveness of interventions. RESULTS: MCIDs could be identified for 10 of 23 instruments affecting seven of nine outcomes. The most notable effect was for depressive symptoms, where three trials reported statistically significant differences that were not clinically meaningful based on available MCIDs. Although differences in statistical significance and MCIDs were noted for other outcomes, they were accounted for in meta-analyses or affected a minimal number of studies within the outcome category. CONCLUSIONS: Incorporating MCIDs affected the interpretation of almost all PROs in the systematic review. MCIDs are important measures of clinical meaningfulness for the interpretation of palliative care research involving PROs. Researchers should consider using instruments with well-established MCIDs and incorporate MCIDs, when available, in study design and interpretation.

Implementation and Effectiveness of Integrating Palliative Care Into Ambulatory Care of Noncancer Serious Chronic Illness: Mixed Methods Review and Meta-Analysis.

PURPOSE: To perform a mixed methods review to evaluate the effectiveness and implementation of models for integrating palliative care into ambulatory care for US adults with noncancer serious chronic illness. METHODS: We searched 3 electronic databases from January 2000 to May 2020 and included qualitative, mixed methods studies and randomized and nonrandomized controlled trials. For each study, 2 reviewers abstracted data and independently assessed for quality. We conducted meta-analyses as appropriate and graded strength of evidence (SOE) for quantitative outcomes. RESULTS: Quantitative analysis included 14 studies of 2,934 patients. Compared to usual care, models evaluated were not more effective for improving patient health-related quality of life (HRQOL) (standardized mean difference [SMD] of 4 of 8 studies, 0.19; 95% CI, ‒0.03 to 0.41) (SOE: moderate) or for patient depressive symptom scores (SMD of 3 of 9 studies, ‒0.09; 95% CI, ‒0.35 to 0.16) (SOE: moderate). Models might have little to no effect on patient satisfaction (SOE: low) but were more effective for increasing advance directive (AD) documentation (relative risk, 1.62; 95% CI, 1.35 to 1.94) (SOE: moderate). Qualitative analysis included 5 studies of 146 patients. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were considered barriers to implementation. CONCLUSION: Models might have little to no effect on decreasing overall symptom burden and were not more effective than usual care for improving HRQOL or depressive symptom scores but were more effective for increasing AD documentation. Additional research should focus on identifying and addressing characteristics and implementation factors critical to integrating models to improve ambulatory, patient-centered outcomes.

Advance Care Planning Shared Decision-Making Tools for Non-Cancer Chronic Serious Illness: A Mixed Method Systematic Review.

CONTEXT: Shared decision-making tools can facilitate advance care planning and goals of care conversations in non-cancer serious illness. More information on integrating these tools in ambulatory care could better support clinicians and patients/caregivers in these conversations. OBJECTIVES: We evaluated effectiveness and implementation of integrating palliative care shared decision-making tools into ambulatory care for U.S. adults with serious, life-threatening illness and their caregivers. DATA SOURCES: We searched PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials (2000 - May 2020) for quantitative controlled, qualitative, and mixed-methods studies. REVIEW METHODS: Two reviewers screened articles, abstracted data, and independently assessed risk of bias or study quality. For quantitative trials, we graded strength of evidence for key outcomes: patient/caregiver satisfaction, depression or anxiety, concordance between patient preferences for care and care received, and healthcare utilization, including advance directive documentation. RESULTS: We included 6 quantitative effectiveness randomized, controlled trials and 5 qualitative implementation studies across primary care and specialty populations. Shared decision-making tools all addressed goals-of-care communication or advance care planning. Palliative care shared decision-making tools may be effective for improving patient satisfaction with communication and advance directive documentation. We were unable to draw conclusions about concordance between preferences and care received. Patients and caregivers preferred advance care planning discussions grounded in patient and caregiver experiences with individualized timing. CONCLUSIONS: For non-cancer serious illness, advance care planning shared decision-making tools may improve several outcomes. Future trials should evaluate concordance with care received and other health care utilization. KEY MESSAGE: This mixed-methods review concludes that when integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools may improve patient satisfaction and advance directive documentation.

Patterns and Predictors of Transitions Across Residential Care Settings and Nursing Homes Among Community-Dwelling Older Adults in the United States.

BACKGROUND AND OBJECTIVES: Older adults prefer to age in place, but sociodemographic, health, and socioeconomic factors may influence their decision to remain in the community. Guided by Andersen's behavioral model, we characterize incident transitions out of the community into residential care settings or nursing homes and identify predictors of these transitions. RESEARCH DESIGN AND METHODS: Study participants include 2,725 (weighted n = 13,704,390) community-dwelling U.S. older adults of the National Health and Aging Trends Study from 2011 to 2018. We examined the associations between sociodemographic, socioeconomic, and health factors and the probability of transition using a multinomial logit model. RESULTS: Over the study period, 86.2% of older adults remained in the community, whereas 9.0% and 4.9% transitioned to residential care settings and nursing homes, respectively. Older age, living alone, having functional and cognitive limitations, and hospitalization were associated with increased risk of transitioning to residential care settings or nursing homes from the community. Blacks and Hispanics were less likely to transition to residential care settings or nursing homes. Adults with lower income had a greater risk of transitioning to nursing homes. Medicaid enrollment did not affect the likelihood of transition. DISCUSSION AND IMPLICATIONS: Majority of older adults remained in the community, and incident transition to residential care settings was more common than to nursing homes. Policy should target sociodemographic, health, and socioeconomic factors that enable older adults to age in place. Future work should examine whether these new residential care settings enhance the quality of life or result in subsequent transitions back into the community.

Thirty years of disparities intervention research: what are we doing to close racial and ethnic gaps in health care?

BACKGROUND: A systematic scan of the disparities intervention literature will allow researchers, providers, and policymakers to understand which interventions are being evaluated to improve minority health and which areas require further research. METHODS: We systematically categorized 391 disparities intervention articles published between 1979 and 2011, covering 11 diseases. We developed a taxonomy of disparities interventions using qualitative theme analysis. We identified the tactic, or what was done to intervene; the strategy, or a group of tactics with common characteristics; and the level, or who was targeted by the effort. RESULTS: The taxonomy included 44 tactics, 9 strategies, and 6 levels. Delivering education and training was the most common strategy (37%). Within education and training, the most common tactics were education about disease (14%) and self-management (11%), whereas communication skills training (3%) and decision-making aids (1%) were less frequent. The strategy of actively engaging the community through tactics such as community health workers and outreach efforts accounted for 6.5% of tactics. Interventions most commonly targeted patients (50%) and community members who were not established patients of the intervening organization (32%). Interventions targeting providers (7%), the microsystem (immediate care team) (9%), organizations (3%), and policies (0.1%) were less common. CONCLUSIONS: Disparities researchers have predominantly focused on the patient as the target for change; future research should also investigate how to improve the system that serves minority patients. Areas for further study include interventions that engage the community, educational interventions that address communication barriers, and the impact of policy reform on disparities in care.