Racial Differences in Nursing Home Quality of Life Among Residents Living With Alzheimer's Disease and Related Dementias.

ObjectivesAmong nursing home (NH) residents with Alzheimer's disease (AD) and AD-related dementias (AD/ADRD), racial/ethnic disparities in quality of care exist. However, little is known about quality of life (QoL). This study examines racial/ethnic differences in self-reported QoL among NH residents with AD/ADRD. Methods: Validated, in-person QoL surveys from 12,562 long-stay NH residents with AD/ADRD in Minnesota (2012-2015) were linked to Minimum Data Set assessments and facility characteristics. Hierarchical linear models assessed disparities in resident-reported mean QoL score (range, 0-100 points), adjusting for case-mix and facility factors. Results: Compared to White residents, racially/ethnically minoritized residents reported significantly lower total mean QoL scores (75.53 points vs. 80.34 points, p < .001). After adjustment for resident- and facility-level characteristics, significant racial/ethnic differences remained, with large disparities in food enjoyment, attention from staff, and engagement domains. Discussion: Policy changes and practice guidelines are needed to address racial/ethnic disparities in QoL of NH residents with AD/ADRD.

Access to preferred skilled nursing facilities: Transitional care pathways for patients with Alzheimer's disease and related dementias.

OBJECTIVE: The study aimed to assess whether individuals with Alzheimer's disease and related dementias (ADRD) experience restricted access to hospitals' high-volume preferred skilled nursing facility (SNF) partners. DATA SOURCES: The data source includes acute care hospital to SNF transitions identified using 100% Medicare Provider Analysis and Review files, 2017-2019. STUDY DESIGN: We model and compare the estimated effect of facility "preferredness" on SNF choice for patients with and without ADRD. We use conditional logistic regression with a 1:1 patient sample otherwise matched on demographic and encounter characteristics. DATA COLLECTION: Our matched sample included 58,190 patients, selected from a total observed population of 3,019,260 Medicare hospitalizations that resulted in an SNF transfer between 2017 and 2019. PRINCIPAL FINDINGS: Overall, patients with ADRD have a lower probability of being discharged to a preferred SNF (52.0% vs. 54.4%, p < 0.001). Choice model estimation using our matched sample suggests similarly that the marginal effect of preferredness on a patient choosing a proximate SNF is 2.4 percentage points lower for patients with ADRD compared with those without (p < 0.001). The differential effect of preferredness based on ADRD status increases when considering (a) the cumulative effect of multiple SNFs in close geographic proximity, (b) the magnitude of the strength of hospital-SNF relationship, and (c) comparing patients with more versus less advanced ADRD. CONCLUSIONS: Preferred relationships are significantly predictive of where a patient receives SNF care, but this effect is weaker for patients with ADRD. To the extent that these high-volume relationships are indicative of more targeted transitional care improvements from hospitals, ADRD patients may not be fully benefiting from these investments. Hospital leaders can leverage integrated care relationships to reduce SNFs' perceived need to engage in selection behavior (i.e., enhanced resource sharing and transparency in placement practices). Policy intervention may be needed to address selection behavior and to support hospitals in making systemic improvements that can better benefit all SNF partners (i.e., more robust information sharing systems).

Samples from patients with AML show high concordance in detection of mutations by NGS at local institutions vs central laboratories.

Next-generation sequencing (NGS) to identify pathogenic mutations is an integral part of acute myeloid leukemia (AML) therapeutic decision-making. The concordance in identifying pathogenic mutations among different NGS platforms at different diagnostic laboratories has been studied in solid tumors but not in myeloid malignancies to date. To determine this interlaboratory concordance, we collected a total of 194 AML bone marrow or peripheral blood samples from newly diagnosed patients with AML enrolled in the Beat AML Master Trial (BAMT) at 2 academic institutions. We analyzed the diagnostic samples from patients with AML for the detection of pathogenic myeloid mutations in 8 genes (DNMT3A, FLT3, IDH1, IDH2, NPM1, TET2, TP53, and WT1) locally using the Hematologic Neoplasm Mutation Panel (50-gene myeloid indication filter) (site 1) or the GeneTrails Comprehensive Heme Panel (site 2) at the 2 institutions and compared them with the central results from the diagnostic laboratory for the BAMT, Foundation Medicine, Inc. The overall percent agreement was over 95% each in all 8 genes, with almost perfect agreement (κ > 0.906) in all but WT1, which had substantial agreement (κ = 0.848) when controlling for site. The minimal discrepancies were due to reporting variants of unknown significance (VUS) for the WT1 and TP53 genes. These results indicate that the various NGS methods used to analyze samples from patients with AML enrolled in the BAMT show high concordance, a reassuring finding given the wide use of NGS for therapeutic decision-making in AML.

Comparing Dementia Classification by Self-Report and Administrative Records in the National Core Indicators-Aging and Disability Survey: A Predictive Modeling Approach.

Policymakers are interested in the long-term services and supports (LTSS) needs of people living with dementia. The National Core Indicators-Aging and Disability (NCI-AD) survey is conducted to evaluate LTSS care needs. However, dementia reporting in NCI-AD varies across states, and is either obtained from state administrative records or self-reported during the survey. We explored the implications of identifying dementia from administrative records versus self-report. We analyzed 24,569 NCI-AD respondents age 65+, of which 22.4% had dementia. To assess dementia accuracy by data source, we fit separate logistic regression models using the administrative and self-reported subsamples. We applied model coefficients to the population whose dementia status came from the opposite source. Using the administrative model to predict self-reported dementia resulted in higher sensitivity than using the self-report model to predict administrative dementia (43.8% vs. 37.9%). The self-report model's diminished sensitivity suggests administrative records may capture cases of dementia missed by self-report.

Information sharing to support care transitions for patients with complex mental health and social needs.

BACKGROUND: Patients with complex behavioral and mental health conditions require significant transitional care coordination. It is unclear how skilled nursing facilities (SNFs) that serve these patients engage in care transfer with hospitals, specifically whether they experience discrepancies in the type of information shared by hospital partners and/or use different approaches to secure needed information. METHODS: Cross-sectional analysis of a national 2019-2020 SNF survey that collected information on transitional care practices with referring hospitals; respondents were directors of nursing services. We used chi-squared tests and descriptive statistics to characterize hospital information sharing practices experienced by facilities that accept complex patients (e.g., serious mental illness, substance use disorder, and/or medication assisted treatment), and to compare them to facilities that treat a less complex population. RESULTS: A total of 215 SNFs had sufficiently complete responses for inclusion in the analysis. Of these respondents, 57% accepted two or more types of patients with complex conditions of interest; these SNFs were more likely to be urban, for-profit, and serve more dual-eligible patients. SNFs accepting complex patients experience information sharing on par with other facilities, and are more likely to receive information on behavioral, social, mental, and functional status (25.41% vs. 12.90%; p = 0.023). These facilities are also more likely to consistently use electronic methods (e.g., an online portal, shared electronic health record [EHR] access) to retrieve information from partner hospitals. CONCLUSIONS: SNFs accepting complex patients demonstrate some evidence of enhanced information retrieval via electronically mediated pathways. Overall, information sharing remains underdeveloped in this care context. Policymakers should continue to prioritize widespread digital infrastructure that supports post-acute care delivery.

Examining Satisfaction and Quality in Home- and Community-Based Service Programs in the United States: A Scoping Review.

BACKGROUND AND OBJECTIVES: Long-term services and supports in the United States are increasingly reliant on home- and community-based services (HCBS). Yet, little is known about the quality of HCBS. We conducted a scoping review of the peer-reviewed literature to summarize HCBS consumer, provider, and stakeholder satisfaction with services as a means of assessing quality. RESEARCH DESIGN AND METHODS: We searched PubMed, OVID-MEDLINE, and SCOPUS to identify articles published from 2000 to 2021 that reported on studies describing a U.S.-based study population. Articles were grouped into 3 categories: drivers of positive consumer satisfaction, drivers of negative consumer satisfaction, and provider and stakeholder perspectives on satisfaction. RESULTS: Our final sample included 27 articles. Positive perceptions of quality and reported satisfaction with services were driven by consistent, reliable, and respectful care providers, and adoption of person-centered models of service delivery. Mistreatment of consumers, staff turnover, training, service interruptions, and unmet functional needs were drivers of negative consumer perceptions of quality. Support for caregivers and emphasis on training were identified by providers and stakeholders as important for providing satisfactory services. DISCUSSION AND IMPLICATIONS: Multiple data challenges limit the ability to systematically evaluate HCBS program quality; however, studies examining single programs found that HCBS consumers are more satisfied and associate higher quality with easy-to-navigate programs and professional staff. Efforts to expand HCBS should also include requirements to systematically evaluate quality outcomes.

Serious Mental Illness in Nursing Homes: Stakeholder Perspectives on the Federal Preadmission Screening Program.

The federal Preadmission Screening and Resident Review (PASRR) program was enacted in the 1980s amid concerns surrounding the quality of nursing home (NH) care. This program is meant to serve as a tool to assist with level of care determinations for NH applicants with serious mental illness (SMI) and was intended to limit the growth in the number of NH residents with SMI. Despite this policy effort, the prevalence of SMI in NHs has continued to increase, and little is known about the mechanisms driving the heterogeneous and suboptimal administration of the PASRR program, absent routine evaluative efforts. We conducted 20 semi-structured interviews with state and national stakeholders to identify factors affecting PASRR program administration and NH care for residents with SMI. Stakeholders expressed concern regarding fragmentation, specifically lack of clarity in the value of assessments beyond a regulatory requirement. Additionally, they cited variable program administration as contributing to fragmented communication patterns and inconsistent training across jurisdictions. Given the number of people with SMI currently residing in NHs, policy and practice should take a person-centered approach to assess how PASRR can be better used to support resident needs.

Serious Mental Illness in the Nursing Home Literature: A Scoping Review.

Nursing homes (NH) and other institutional-based long-term care settings are not considered an appropriate place for the care of those with serious mental illness, absent other medical conditions or functional impairment that warrants skilled care. Despite policy and regulatory efforts intended to curb the unnecessary placement of people with serious mental illness (SMI) in these settings, the number of adults with SMI who receive care in NHs has continued to rise. Through a scoping review, we sought to summarize the available literature describing NH care for adults with SMI from 2000 to 2020. We found that SMI was operationalized and measured using a variety of methods and diagnoses. Most articles focused on a national sample, with the main unit of analysis being at the NH resident-level and based on analysis of secondary data sets. Understanding current evidence about the use of NHs by older adults with SMI is important to policy and practice, especially as we continue to grapple as a nation with how to provide quality care for older adults with SMI.

Evidence for Action: Addressing Systemic Racism Across Long-Term Services and Supports.

Long-term services and supports (LTSS), including care received at home and in residential settings such as nursing homes, are highly racially segregated; Black, Indigenous, and persons of color (BIPOC) users have less access to quality care and report poorer quality of life compared to their White counterparts. Systemic racism lies at the root of these disparities, manifesting via racially segregated care, low Medicaid reimbursement, and lack of livable wages for staff, along with other policies and processes that exacerbate disparities. We reviewed Medicaid reimbursement, pay-for-performance, public reporting of quality of care, and culture change in nursing homes and integrated home- and community-based service (HCBS) programs as possible mechanisms for addressing racial and ethnic disparities. We developed a set of recommendations for LTSS based on existing evidence, including (1) increase Medicaid and Medicare reimbursement rates, especially for providers serving high proportions of Medicaid-eligible and BIPOC older adults; (2) reconsider the design of pay-for-performance programs as they relate to providers who serve underserved groups; (3) include culturally sensitive measures, such as quality of life, in public reporting of quality of care, and develop and report health equity measures in outcomes of care for BIPOC individuals; (4) implement culture change so services are more person-centered and homelike, alongside improvements in staff wages and benefits in high-proportion BIPOC nursing homes; (5) expand access to Medicaid-waivered HCBS services; (6) adopt culturally appropriate HCBS practices, with special attention to family caregivers; (7) and increase promotion of integrated HCBS programs that can be targeted to BIPOC consumers, and implement models that value community health workers. Multipronged solutions may help diminish the role of systemic racism in existing racial disparities in LTSS, and these recommendations provide steps for action that are needed to reimagine how long-term care is delivered, especially for BIPOC populations.

Connecting policy to licensed assisted living communities, introducing health services regulatory analysis.

OBJECTIVE: To document dementia-relevant state assisted living regulations and their changes over time as they pertain to licensed care settings. DATA SOURCES: For all states, current directories of licensed assisted living communities and state regulations for each year, 2007-2018, were obtained from state agency websites and Nexis Uni, respectively. STUDY DESIGN: We identified multiple types of regulatory classifications for each state and documented the presence or absence of specific dementia care provisions in the regulations for each type by study year. Maps and summary statistics were used to compare results to previous research and document change longitudinally. DATA COLLECTION/EXTRACTION METHODS: We used a policy analysis approach to connect communities listed in directories to applicable regulatory text. Then, we employed policy surveillance and question-based coding to record the presence or absence of specific policies for each classification and study year. PRINCIPAL FINDINGS: Our team empirically documented provisions requiring dementia-specific training for administrators and direct care staff, and cognitive impairment screening for each study year. We found that 23 states added one or more of these requirements for one or more license types, but the states that had these provisions for all types of licensed assisted living declined from four to two. CONCLUSIONS: We identified significant, previously undocumented, within-state policy variation for assisted living licensed settings between 2007 and 2018. Using the regulatory classification instead of the state as the unit of analysis revealed that many policy adoptions were limited to dementia-designated settings. This suggests that people living with dementia in general assisted living are not afforded the same protections. We call our approach health services regulatory analysis and argue that it has the potential to identify gaps in existing policies, an important endeavor for health services research in assisted living and other care settings.

Patients with FLT3-mutant AML needed to enroll on FLT3-targeted therapeutic clinical trials.

We sought to identify the total number of therapeutic trials targeting FLT3-mutant acute myeloid leukemia (AML) to estimate the number of patients needed to satisfy recruitment when compared with the incidence of this mutation in the US AML population. A systematic review of all therapeutic clinical trials focusing on adult FLT3-mutated AML was conducted from 2000 to 2017. An updated search was performed using ClinicalTrials.gov for trials added between October 2017 and December 2018. Analysis was performed for ClinicalTrials.gov search results from 2000 to 2017 to provide descriptive estimates of discrepancies between anticipated clinical trial enrollment using consistently cited rates of adult participation of 1%, 3%, and 5%, as well as 10% participation identified by the American Society of Clinical Oncology in 2008. Twenty-five pharmaceutical or biological agents aimed at treating FLT3-mutant AML were identified. Pharmaceutical vs cooperative group/nonprofit support was 2.3:1, with 30 different pharmaceutical collaborators and 13 cooperative group/nonprofit collaborators. The number of patients needed to satisfy study enrollment begins to surpass the upper bound of estimated participation in 2010, noticeably surpassing projected participation rates between 2015 and 2016. The number of patients needed to satisfy study enrollment surpasses 3% and 5% rates of historical participation for US-only trials in 2017. We estimate that 15% of all US patients with FLT3-mutant AML would have to enroll in US and internationally accruing trials to satisfy requirements in 2017, or approximately 3 times the upper level of historical participation rates in the United States. The current clinical trial agenda in this space requires high percentage enrollment for sustainability.

Representation of therapy-related myelodysplastic syndrome in clinical trials over the past 20 years.

Therapy-related myelodysplastic syndrome (t-MDS), defined as MDS occurring after previous exposure to chemotherapy or radiotherapy, constitutes 10% to 20% of all MDS diagnoses. t-MDS patients tend to have higher-risk disease and worse outcomes than de novo MDS patients and are often excluded from therapeutic clinical trials. To explore this further, we extracted clinical trials across all status types registered on ClinicalTrials.gov from 1999 to 2018 studying untreated MDS patients. Using these specific search criteria, we analyzed 317 therapeutic MDS trials based on study status, therapeutic indication, eligibility criteria, and sponsor type to examine if these factors influenced t-MDS patient inclusion. Only 18 studies (5.7%) accrued 231 t-MDS patients in total, representing 3.2% of the total accrued MDS trial patient population. Fewer t-MDS patients were accrued in therapeutic trials sponsored by pharmaceutical sponsors vs nonpharmaceutical sponsors (2.8% vs 4.0%; P = .0073). This pattern of exclusion continues in actively enrolling trials; only 5 (10%) of 49 studies specifically mention the inclusion of t-MDS patients in their eligibility criteria. Our results indicate that therapeutic MDS trials seem to exclude t-MDS patients, rendering study results less applicable to this subset of MDS patients, who often have poor outcomes. Our study emphasizes the importance of the recent focus by National Cancer Institute cooperative groups and societies to broaden eligibility criteria for all patients.

Trends in Medical Aid in Dying in Oregon and Washington.

Importance: The combined 28 years of data of medical aid in dying (MAID) between Oregon (OR) and Washington (WA) are the most comprehensive in North America. No reports to date have compared MAID use in different US states. Objective: To evaluate and compare patterns of MAID use between the states with the longest-running US death with dignity programs. Design, Setting, and Participants: A retrospective observational cohort study of OR and WA patients with terminal illness who received prescriptions as part of their states' legislation allowing MAID. All published annual reports, from 1998 to 2017 in OR and from 2009 to 2017 in WA, were reviewed. A total of 3368 prescriptions were included. Main Outcomes and Measures: Number of deaths from self-administration of lethal medication vs number of prescriptions written. Results: A combined 3368 prescriptions were written in OR and WA, with 2558 patient deaths from lethal ingestion (76.0%). Of the 2558 patients, most were male (1311 [51.3%]), older than 65 years (1851 [72.4%]), and non-Hispanic white (2426 [94.8%]). The most common underlying illnesses were cancer (1955 [76.4%]), neurologic illness (261 [10.2%]), lung disease (144 [5.6%]), and heart disease (117 [4.6%]). Loss of autonomy (2235 [87.4%]), impaired quality of life (2203 [86.1%]), and loss of dignity (1755 [68.6%]) were the most common reasons for pursuing MAID. Time between drug intake to coma ranged from 1 to 660 minutes and time from drug intake to death ranged from 1 to 6240 minutes. In the 1557 patients for whom rates of complications were reported, 1494 (96.0%) did not experience a complication (592 of 626 [94.6%] in OR and 902 of 931 [96.8%] in WA). Eight patients (<0.5%) regained consciousness after drug ingestion in OR. Annual rates per year for percentage of patients who received a prescription ingesting the prescribed medication ranged from 48% to 87%, with no significant time trend in OR (adjusted odds ratio per year, 1.01; 95% CI, 0.99-1.02; P = .59) but with an increase over time in WA (adjusted odds ratio per year, 1.13; 95% CI, 1.08-1.19; P < .001). In both OR and WA there were increases in the number of patient deaths due to MAID per 1000 deaths over time. Conclusions and Relevance: In this study, MAID results in Oregon and Washington were similar, although MAID use measured as a percentage of patients prescribed lethal medications and then self-administering them increased only in WA. Most patients who acquired lethal prescriptions had cancer or terminal illnesses that are difficult to palliate and lead to loss of autonomy, dignity, and quality of life.