Racial and ethnic differences in disease course Medicare expenditures for beneficiaries with dementia.

BACKGROUND: Research on racial and ethnic disparities in costs of care during the course of dementia is sparse. We analyzed Medicare expenditures for beneficiaries with dementia to identify when during the course of care costs are the highest and whether they differ by race and ethnicity. METHODS: We analyzed data from the 2000-2016 Health and Retirement Study (HRS) linked with corresponding Medicare claims to estimate total Medicare expenditures for four phases: (1) the year before a dementia diagnosis, (2) the first year following a dementia diagnosis, (3) ongoing care for dementia after the first year, and (4) the last year of life. We estimated each patient's phase-specific and disease course Medicare expenditures by using a race-specific survival model and monthly expenditures adjusted for patient characteristics. We investigated healthcare utilization by service type across races/ethnicities and phases of care. RESULTS: Adjusted mean total Medicare expenditures for non-Hispanic (NH) Black ($165,730) and Hispanic beneficiaries with dementia ($160,442) exceeded corresponding expenditures for NH Whites ($136,326). In the year preceding and immediately following initial dementia diagnosis, mean Medicare expenditures for NH Blacks ($26,337 and $20,429) exceeded expenditures for Hispanics and NH Whites ($21,399-23,176 and 17,182-18,244). The last year of life was responsible for the greatest cost contribution: $51,294 (NH Blacks), $47,469 (Hispanics), and $39,499 (NH Whites). These differences were driven by greater use of high-cost services (e.g., emergency department, inpatient and intensive care), especially during the last year of life. CONCLUSIONS: NH Black and Hispanic beneficiaries with dementia had higher disease course Medicare expenditures than NH Whites. Expenditures were highest for NH Black beneficiaries in every phase of care. Further research should address mechanisms of such disparities and identify methods to improve communication, shared decision-making, and access to appropriate services for all populations.

Life-Sustaining Treatments Among Medicare Beneficiaries with and without Dementia at the End of Life.

BACKGROUND: Older adults with dementia including Alzheimer's disease may have difficulty communicating their treatment preferences and thus may receive intensive end-of-life (EOL) care that confers limited benefits. OBJECTIVE: This study compared the use of life-sustaining interventions during the last 90 days of life among Medicare beneficiaries with and without dementia. METHODS: This cohort study utilized population-based national survey data from the 2000-2016 Health and Retirement Study linked with Medicare and Medicaid claims. Our sample included Medicare fee-for-service beneficiaries aged 65 years or older deceased between 2000 and 2016. The main outcome was receipt of any life-sustaining interventions during the last 90 days of life, including mechanical ventilation, tracheostomy, tube feeding, and cardiopulmonary resuscitation. We used logistic regression, stratified by nursing home use, to examine dementia status (no dementia, non-advanced dementia, advanced dementia) and patient characteristics associated with receiving those interventions. RESULTS: Community dwellers with dementia were more likely than those without dementia to receive life-sustaining treatments in their last 90 days of life (advanced dementia: OR = 1.83 [1.42-2.35]; non-advanced dementia: OR = 1.16 [1.01-1.32]). Advance care planning was associated with lower odds of receiving life-sustaining treatments in the community (OR = 0.84 [0.74-0.96]) and in nursing homes (OR = 0.68 [0.53-0.86]). More beneficiaries with advanced dementia received interventions discordant with their EOL treatment preferences. CONCLUSIONS: Community dwellers with advanced dementia were more likely to receive life-sustaining treatments at the end of life and such treatments may be discordant with their EOL wishes. Enhancing advance care planning and patient-physician communication may improve EOL care quality for persons with dementia.

Estimating prevalence of early symptomatic Alzheimer's disease in the United States.

INTRODUCTION: Understanding the prevalence of treatment-eligible Alzheimer's disease (AD) is crucial for policy planning. METHODS: We used a comprehensive literature review and population cascade approach to estimate the number of amyloid-positive, clinically diagnosed patients with mild cognitive impairment (MCI) or mild dementia due to AD in the United States. RESULTS: An estimated 666,646 individuals were identified as having MCI due to AD (range: 351,926-1,227,776) and 620,850 individuals as having mild dementia due to AD (range: 445,082-820,339). In a US population of 76 million individuals aged 60 or older in 2021, the estimates of MCI and mild dementia due to AD increased with age. CONCLUSIONS: As earlier diagnosis of AD and new disease-modifying treatments become available, accurate population estimates are required to reduce uncertainty in the number of clinically diagnosed patients eligible for amyloid-targeting therapies.

Universality and scaling in complex networks from periods of Chinese history.

Critical physical systems with large numbers of molecules can show universal and scaling behaviors. It is of interest to know whether human societies with large numbers of people can show the same behaviors. Here, we use network theory to analyze Chinese history in periods 209 BCE-23 CE and 515-618 CE) related to the Western Han-Xin Dynasty and the late Northern Wei-Sui Dynasty, respectively. Two persons are connected when they appear in the same historical event. We find that the historical networks from two periods separated about 500 years have interesting universal and scaling behaviors, and they are small-world networks; their average cluster coefficients as a function of degree are similar to the network of movie stars. In the historical networks, the persons with larger degrees prefer to connect with persons with a small degree; however, in the network of movie stars, the persons with larger degrees prefer to connect with persons with large degrees. We also find an interesting similar mechanism for the decline or collapse of historical Chinese dynasties. The collapses of the Xin dynasty (9-23 CE) and the Sui dynasty (581-618 CE) were initiated from their arrogant attitude toward neighboring states.

Variation in Medicaid and commercial payer coverage of aducanumab for Alzheimer's disease.

INTRODUCTION: Ever since the United States Food and Drug Administration (FDA) approved aducanumab and Centers for Medicare & Medicaid Service (CMS) restricted coverage for the drug, a crucial question has been how other payers will behave. This study examined how Medicaid and commercial plans cover aducanumab. METHODS: We created a database of aducanumab coverage policies issued by Medicaid fee-for-service programs (50 states and DC) and 35 of the largest commercial plans (covering ∼ 84% of the commercially insured population). RESULTS: We found that only 41% of Medicaid fee-for-service plans have issued a publicly available coverage policy for aducanumab and that there is wide variation in these coverage criteria. Although the majority of included commercial plans have issued an aducanumab coverage policy, only five plans covered aducanumab for their enrollees. Available coverage polices showed little consistency in how to measure sufficient treatment response. DISCUSSION: Differences in coverage policies mean that Alzheimer's patients' access to aducanumab may vary across jurisdictions and across commercial insurers. HIGHLIGHTS: Less than half of state Medicaid fee-for-service plans issued a publicly available coverage policy for aducanumab. Available Medicaid coverage policies varied substantially in their coverage criteria. The majority of included commercial plans issued an aducanumab coverage policy; only five plans covered aducanumab. Available coverage polices showed little consistency in how to measure sufficient treatment response.

Alzheimer's disease medication use and adherence patterns by race and ethnicity.

BACKGROUND: We examined racial and ethnic differences in medication use for a representative US population of patients with Alzheimer's disease and related dementias (ADRD). METHODS: We examined cholinesterase inhibitors and memantine initiation, non-adherence, and discontinuation by race and ethnicity, using data from the 2000-2016 Health and Retirement Study linked with Medicare and Medicaid claims. RESULTS: Among newly diagnosed ADRD patients (n = 1299), 26% filled an ADRD prescription ≤90 days and 36% ≤365 days after diagnosis. Among individuals initiating ADRD-targeted treatment (n = 1343), 44% were non-adherent and 24% discontinued the medication during the year after treatment initiation. Non-Hispanic Blacks were more likely than Whites to not adhere to ADRD medication therapy (odds ratio: 1.50 [95% confidence interval: 1.07-2.09]). DISCUSSION: Initiation of ADRD-targeted medications did not vary by ethnoracial group, but non-Hispanic Blacks had lower adherence than Whites. ADRD medication non-adherence and discontinuation were substantial and may relate to cost and access to care. HIGHLIGHTS: Initiation of anti-dementia medications among newly diagnosed Alzheimer's disease and related dementias (ADRD) patients was low in all ethnoracial groups. ADRD medication non-adherence and discontinuation were substantial and may relate to cost and access to care. Compared to Whites, Blacks and Hispanics had lower use, poorer treatment adherence, and more frequent discontinuation of ADRD medication, but when controlling for disease severity and socioeconomic factors, racial disparities diminish. Our findings demonstrate the importance of adjusting for socioeconomic characteristics and disease severity when studying medication use and adherence in ADRD patients.

Cost-effectiveness models for Alzheimer's disease and related dementias: IPECAD modeling workshop cross-comparison challenge.

INTRODUCTION: The credibility of model-based economic evaluations of Alzheimer's disease (AD) interventions is central to appropriate decision-making in a policy context. We report on the International PharmacoEconomic Collaboration on Alzheimer's Disease (IPECAD) Modeling Workshop Challenge. METHODS: Two common benchmark scenarios, for the hypothetical treatment of AD mild cognitive impairment (MCI) and mild dementia, were developed jointly by 29 participants. Model outcomes were summarized, and cross-comparisons were discussed during a structured workshop. RESULTS: A broad concordance was established among participants. Mean 10-year restricted survival and time in MCI in the control group ranged across 10 MCI models from 6.7 to 9.5 years and 3.4 to 5.6 years, respectively; and across 4 mild dementia models from 5.4 to 7.9 years (survival) and 1.5 to 4.2 years (mild dementia). DISCUSSION: The model comparison increased our understanding of methods, data used, and disease progression. We established a collaboration framework to assess cost-effectiveness outcomes, an important step toward transparent and credible AD models.

Family Spillover Effects: Are Economic Evaluations Misrepresenting the Value of Healthcare Interventions to Society?

The societal impacts of health interventions are seldom incorporated into health economic evaluations, including the impact that illness can have on informal or unpaid caregivers and other family members (i.e., "family spillover effects"). Previous research has demonstrated that by excluding family spillover effects, the value of health interventions may be underestimated on average. In this commentary, we discuss how the inclusion of spillover effects influences how we value interventions and, given the extent to which caregiver/family effects are largely not captured or known, propose ways in which these data could be more systematically collected or estimated and used by researchers. These recommendations include prioritizing data collection alongside clinical trials and patient registries, engaging expert opinion panels, and developing mapping algorithms for estimating caregiver/family utility values from non-preference-based caregiver health-related quality-of-life measures and/or from patient preference-based measures.

Racial and Ethnic Differences in Hospice Use and Hospitalizations at End-of-Life Among Medicare Beneficiaries With Dementia.

Importance: The pool of studies examining ethnic and racial differences in hospice use and end-of-life hospitalizations among patients with dementia is limited and results are conflicting, making it difficult to assess health care needs of underresourced racial and ethnic groups. Objective: To explore differences in end-of-life utilization of hospice and hospital services among patients with dementia by race and ethnicity. Design, Setting, and Participants: This cohort study used national survey data from the Health and Retirement Study linked with Medicare and Medicaid claims that reflected a range of socioeconomic, health, and psychosocial characteristics. Eligible participants were Medicare fee-for-service beneficiaries aged 65 years or older diagnosed with dementia who died between 2000 and 2016. Analyses were performed from June to December 2021. Exposures: Race and ethnicity. Main Outcomes and Measures: We examined the frequency and costs of hospice care, emergency department (ED) visits, and hospitalizations during the last 180 days of life among Medicare decedents with dementia. We analyzed the proportion of dementia decedents with advance care planning and their end-of-life care preferences. Results: The cohort sample included 5058 beneficiaries with dementia (mean [SD] age, 85.5 [8.0] years; 3038 women [60.1%]; 809 [16.0%] non-Hispanic Black, 357 [7.1%] Hispanic, and 3892 non-Hispanic White respondents [76.9%]). In adjusted analysis, non-Hispanic Black decedents (odds ratio [OR], 0.65; 95% CI, 0.55-0.78), nursing home residents (OR, 0.81; 95% CI, 0.71-0.93), and survey respondents represented by a proxy (OR, 0.84; 95% CI, 0.71-0.99) were less likely to use hospice, whereas older decedents (age 75-84 vs 65-74 years: OR, 1.39; 95% CI, 1.12-1.72; age ≥85 vs 65-74 years: OR, 1.39; 95% CI, 1.13-1.71), women (OR, 1.19; 95% CI, 1.05-1.35), and decedents with higher education (high school vs less than high school: OR, 1.17; 95% CI, 1.01-1.36; more than high school vs less than high school: OR, 1.32; 95% CI, 1.13-1.54), more severe cognitive impairment (OR, 1.51; 95% CI, 1.02-2.23), and more instrumental activities of daily living limitations (OR, 1.07; 95% CI, 1.01-1.12) were associated with higher hospice enrollment. A higher proportion of Black and Hispanic decedents with dementia used ED (645 of 809 [79.7%] and 274 of 357 [76.8%] vs 2753 of 3892 [70.7%]; P < .001) and inpatient services (625 of 809 [77.3%] and 275 of 357 [77.0%] vs 2630 of 3892 [67.5%]; P < .001) and incurred roughly 60% higher inpatient expenditures at the end of life compared with White decedents (estimated mean: Black, $23 279; 95% CI, $20 690-$25 868; Hispanic, $23 471; 95% CI, $19 532-$27 410 vs White, $14 609; 95% CI, $13 800-$15 418). A higher proportion of Black and Hispanic than White beneficiaries with dementia who were enrolled in hospice were subsequently admitted to the ED (56 of 309 [18.1%] and 22 of 153 [14.4%] vs 191 of 1967 [9.7%]; P < .001) or hospital (48 of 309 [15.5%] and 17 of 153 [11.1%] vs 119 of 1967 [6.0%]; P < .001) before death. The proportion of dementia beneficiaries completing advance care planning was lower among Black (146 of 704 [20.7%]) and Hispanic (66 of 308 [21.4%]) beneficiaries compared with White beneficiaries (1871 of 3274 [57.1%]). A higher proportion of Black and Hispanic decedents with dementia had written instructions choosing all care possible to prolong life (30 of 144 [20.8%] and 12 of 65 [18.4%] vs 72 of 1852 [3.9%]), whereas a higher proportion of White decedents preferred to limit care in certain situations (1708 of 1840 [92.8%] vs 114 of 141 [80.9%] and 51 of 64 [79.7%]), withhold treatments (1448 of 1799 [80.5%] vs 87 of 140 [62.1%] and 41 of 62 [66.1%]), and forgo extensive life-prolonging measures (1712 of 1838 [93.1%] vs 120 of 138 [87.0%] and 54 of 65 [83.1%]). Conclusions and Relevance: The results of this cohort study highlight unique end-of-life care utilization and treatment preferences across racial and ethnic groups among patients with dementia. Medicare should consider alternative payment models to promote culturally competent end-of-life care and reduce low-value interventions and costs among the population with dementia.

When are breakthrough therapies cost-effective?

BACKGROUND: An increasing proportion of novel drug approvals use accelerated pathways, with notable growth in the US Food and Drug Administration-designated breakthrough pathway in recent years. Breakthrough therapy (BT) designation suggests that these therapies offer substantial potential to improve health outcomes but their value for money is not fully understood, as BTs typically cost more than non-BTs (NBTs). OBJECTIVE: To assess the economic value of BTs and factors associated with their reported value. METHODS: Using the Tufts Medical Center Cost-Effectiveness (CE) Analysis Registry, we (1) summarized the CE of BTs, as measured by cost per quality-adjusted-life-year (QALY); (2) compared the CE of BTs and NBTs in the United States; and (3) identified factors associated with BT CE using general estimating equation models across US willingness-to-pay (WTP) benchmarks ($50K-$150K/QALY). RESULTS: Between 2013 and 2018, the US Food and Drug Administration approved 279 drugs, designating 83 (32%) as BTs. Incremental costs and health gains (QALYs) were higher for BTs relative to NBTs ($29,000 vs $20,000 and 0.7 vs 0.2 QALYs, respectively), and BTs had more favorable CE ratios compared with NBTs (median values $38,000/QALY vs $50,000/QALY, respectively). For BTs, hepatitis C treatments had the most favorable CE ratios, which may be driven by the curative nature of some hepatitis C therapies. Furthermore, BT CE ratios for new molecular entities (NMEs) were about 40% lower than ratios for non-NME BTs on average, which may signal more value for money when the BT has a new active molecule. Regression analysis to identify trends driving CE found that BT drugs compared with active comparators (instead of best supportive care) were less likely to be cost-effective at standard US WTP thresholds (odds ratio [OR] = 0.1-0.6) and that BTs in the neoplasm space also trended less likely to be cost-effective (OR = 0.12-0.43). CE ratios reported by studies with industry funding were also more likely to be cost-effective than ratios from studies with other funding sources (OR = 4.3-4.5), though this finding was not significant at WTP thresholds over $50,000/QALY gained. CONCLUSIONS: Evidence from published, peer-reviewed CE studies suggests that BTs may confer greater health benefits than NBTs in terms of overall QALYs. Our analysis supports that the US Food and Drug Administration BT designation may be associated with increased value for money for these BTs. However, factors such as the disease area, NME status, and comparator (active vs standard of care) will also influence whether these therapies are cost-effective. DISCLOSURES: Dr Cohen reports grants or contracts from PhRMA Foundation, National Pharmaceutical Council, AstraZeneca, Bristol-Myers Squibb, Eli Lilly and Company, Gilead Sciences, Regeneron, Pfizer, Merck, Johnson & Johnson, Vir Biotechnology, Moderna, Amgen, and Lundbeck; consulting fees from AbbVie, Biogen, IQVIA, Novartis, Partnership for Health Analytic Research, Pharmerit, Precision Health Economics, Sage, Sanofi, and Sarepta; and stock or stock options from Bristol-Myers Squibb, Johnson & Johnson, and Merck. Ms Kowal is an employee and stockholder of Genentech, Inc. Dr Yeh is an employee and stockholder of Roche, Inc.

Addressing Challenges to Alternative Payment Models for New Alzheimer's Disease Therapies for US Commercial Payers.

Commercial payers that ultimately decide to cover aducanumab or other Alzheimer's disease therapies may require innovative payment tools to minimize their financial risk given the uncertain benefits and high cost of such treatments. Drawing on the published evidence, we propose two different types of payment models applicable to disease-modifying therapies in Alzheimer's disease, and suggest four strategies to overcome challenges in their implementation. Such strategies range from developing best practices for outcome measurement in Alzheimer's disease, investing in infrastructure to collect real-world data, increasing representativeness of registry data in Alzheimer's disease, and integrating the diagnostic, treatment, and payment landscape. These important steps could make access to emerging therapies in Alzheimer's disease more sustainable in the long term, and could serve as a blueprint for better access to novel therapies in other indications in the future.

Herd Immunity Effects in Cost-Effectiveness Analyses among Low- and Middle-Income Countries.

BACKGROUND: Herd immunity (HI) is a key benefit of vaccination programs, but the effects are not routinely included in cost-effectiveness analyses (CEAs). OBJECTIVE: This study investigated how the inclusion of HI in CEAs may influence the reported value of immunizations in low- and middle-income countries (LMICs) and illustrated the implications for COVID-19 immunization. METHODS: We reviewed immunization CEAs published from 2000 to 2018 focusing on LMICs using data from the Tufts Medical Center CEA Registries. We investigated the proportion of studies that included HI, the methods used, and the incremental cost-effectiveness ratios (ICERs) reported. When possible, we evaluated how ICERs would change with and without HI. RESULTS: Among the 243 immunization CEAs meeting inclusion criteria, 44 studies (18%) included HI. Of those studies, 11 (25%) used dynamic transmission models, whereas the remainder used static models. Sixteen studies allowed for ICER calculations with and without HI (n = 48 ratios). The inclusion of HI always resulted in more favorable ratios. In 20 cases (42%), adding HI decreased the ICERs enough to cross at least one or more common cost-effectiveness benchmarks for LMICs. Among pneumococcal vaccination studies, including HI in the analyses decreased seven of 24 ICERs enough to cross at least one cost-effectiveness benchmark. CONCLUSION: The full value of immunization may be underestimated without considering a scenario in which HI is achieved. Given the evidence in pneumococcal CEAs, COVID-19 vaccine value assessments should aim to show ICERs with and without HI to inform decision-making in LMICs.

Contextual Considerations and Recommendations for Estimating the Value of Alzheimer's Disease Therapies.

The pipeline for new treatments for Alzheimer's disease (AD) in the USA contains over 100 different agents, 80% of which can be categorized as disease-modifying therapies. The regulatory approval of the disease-modifying agent aducanumab has brought more attention to the complexity of the diagnosis, evaluation, and treatment of AD and the difficult decisions payers and policy makers will face over the next few years as innovation continues in this space. The value of AD treatment can vary widely according to the perspective of the analysis, sources of data, and methodological approach for the value assessment. This article focuses on AD-specific data gaps and measurement challenges and provides guidance for evidence generation to facilitate better value assessments for future AD treatments.

Quantitative evaluation of the microstructure of rapid eye movement sleep in refractory epilepsy: a preliminary study using electroencephalography and heart rate variability analysis.

INTRODUCTION: Patients with epilepsy have a disturbed sleep architecture. Polysomnographic studies have shown that patients with refractory epilepsy have decreased rapid eye movement (REM) sleep and longer REM latency than those with medically controlled epilepsy. However, little is known about the differences in the REM sleep microstructure between these patient groups. METHODS: We conducted a retrospective case-control study of 20 patients with refractory epilepsy (refractory group) and 28 patients with medically controlled epilepsy (medically controlled group). All patients completed sleep questionnaires and underwent overnight in-lab polysomnography. Five-minute electroencephalogram recordings at the C3 and C4 electrodes from each REM sleep were selected for spectral analysis, and 5-min electrocardiogram segments recorded during REM sleep were used for heart rate variability analysis. The groups' scores on the sleep questionnaires, polysomnographic sleep parameters, indices of sleep-related breathing disorders, and REM sleep electroencephalogram spectra were compared. RESULTS: The refractory group had decreased REM sleep (p < 0.001) and longer REM latency (p = 0.0357) than those of the medically controlled group. Moreover, electroencephalogram spectral analysis revealed that the refractory group had decreased absolute beta power (p = 0.0039) and relative beta power (p = 0.0035) as well as increased relative delta power (p = 0.0015) compared with the medically controlled group. CONCLUSIONS: Differences in the polysomnographic macrostructure and REM sleep microstructure between the study groups suggest REM sleep dysregulation in patients with refractory epilepsy.

Long-term effectiveness of an mHealth-tailored physical activity intervention in youth with congenital heart disease: A randomized controlled trial.

AIMS: To evaluate the long-term effectiveness of the Care & Organize Our Lifestyle (COOL) programme, a self-regulation theory-based mHealth programme, on improving disease knowledge and physical activity in youth with congenital heart disease (CHD). DESIGN: A three-arm parallel-group randomized controlled trial. METHODS: A total 143 participants with simple and moderate CHD aged 15-24 years were recruited from June 2016 to February 2018. The 12-month programme compared two active intervention groups to a standard-care control group (n = 47). Participants in one active intervention group (n = 49) were provided with COOL Passport, a mobile healthcare application. Those in the other group (n = 47) were provided with access to the Health Promotion Cloud system and use of game-based interactive platforms along with COOL Passport. Outcomes were the Leuven Knowledge Questionnaire for Congenital Heart Disease and the International Physical Activity Questionnaire-Taiwan Show-Card Version. RESULTS: After 12 months, 103 participants remained; the overall attrition rate was 28%. No significant differences were observed between the groups in any domain of disease knowledge after 6 months or 1 year. Neither active group exhibited significantly greater physical activity intensity than the standard-care control group in any month during the 1 year. CONCLUSION: The mHealth-tailored intervention of the COOL programme did not improve disease knowledge or physical activity in young adults with CHD. IMPACT: The application of the COOL Passport and Health Promotion Cloud system and use of game-based interactive platforms must be modified and verified in future studies and may have clinical potential. TRIAL REGISTRATION: The registry of clinical trials was ClinicalTrials.gov: NCT04264650.

Dementia Diagnosis Disparities by Race and Ethnicity.

BACKGROUND: Dementia is often underdiagnosed and this problem is more common among some ethnoracial groups. OBJECTIVE: The objective of this study was to examine racial and ethnic disparities in the timeliness of receiving a clinical diagnosis of dementia. RESEARCH DESIGN: This was a prospective cohort study. SUBJECTS: A total of 3966 participants age 70 years and above with probable dementia in the Health and Retirement Study, linked with their Medicare and Medicaid claims. MEASURES: We performed logistic regression to compare the likelihood of having a missed or delayed dementia diagnosis in claims by race/ethnicity. We analyzed dementia severity, measured by cognition and daily function, at the time of a dementia diagnosis documented in claims, and estimated average dementia diagnosis delay, by race/ethnicity. RESULTS: A higher proportion of non-Hispanic Blacks and Hispanics had a missed/delayed clinical dementia diagnosis compared with non-Hispanic Whites (46% and 54% vs. 41%, P<0.001). Fully adjusted logistic regression results suggested more frequent missed/delayed dementia diagnoses among non-Hispanic Blacks (odds ratio=1.12; 95% confidence interval: 0.91-1.38) and Hispanics (odds ratio=1.58; 95% confidence interval: 1.20-2.07). Non-Hispanic Blacks and Hispanics had a poorer cognitive function and more functional limitations than non-Hispanic Whites around the time of receiving a claims-based dementia diagnosis. The estimated mean diagnosis delay was 34.6 months for non-Hispanic Blacks and 43.8 months for Hispanics, compared with 31.2 months for non-Hispanic Whites. CONCLUSIONS: Non-Hispanic Blacks and Hispanics may experience a missed or delayed diagnosis of dementia more often and have longer diagnosis delays. When diagnosed, non-Hispanic Blacks and Hispanics may have more advanced dementia. Public health efforts should prioritize racial and ethnic underrepresented communities when promoting early diagnosis of dementia.

Caring perceptions and experiences of fathers of children with congenital heart disease: A systematic review of qualitative evidence.

AIM: To identify fathers' perceptions and experiences of caring for their children with congenital heart disease. DESIGN: A qualitative systematic review. DATA SOURCES: PubMed, Clinical Key, the Joanna Briggs Institute Evidence-based practice database, CINAHL Complete, Embase and PsycINFO were searched for all journal articles published before May 2020. REVIEW METHODS: After applying the selection criteria, five studies were identified reporting on fathers with children between 1 month and 12 years. The quality of the articles was evaluated. RESULTS: Six main themes regarding fathers' perceptions and experiences of caring for their children with congenital heart disease were identified: (1) lack of disease knowledge, (2) responsibility to the family and emotional suppression, (3) gratitude for the sustained life of their children, (4) acceptance of being different from others, (5) regrouping and planning for the future and (6) the struggles of father-child relationships. CONCLUSION: In caring for their children with congenital heart disease, fathers are akin to a suffering warrior, full of hardship. With a self-imposed sense of responsibility and suppressed emotions, fathers may feel lonely and hurt, but they must fight for their families and children.