Physician- and patient-reported outcomes by hereditary angioedema type: Data from a real-world study.

Background: Hereditary angioedema (HAE) is a rare genetic condition characterized by painful and often debilitating swelling attacks. Little is known about the differences in outcomes between patients with HAE types I or II (type I: HAE caused by C1 esterase inhibitor deficiency; type II: HAE caused by C1 esterase inhibitor dysfunction), with decreased or dysfunctional C1 esterase inhibitor (C1-INH), and those with normal C1-INH (nC1-INH-HAE). Objective: To compare physician- and patient-reported real-world outcomes in patients with HAE types I/II versus patients with nC1-INH-HAE. Methods: Data were drawn from the Adelphi HAE Disease Specific ProgrammeTM a real-world, cross-sectional survey of HAE-treating physicians and their patients in the United States conducted between July and November 2021. Physicians reported patient disease activity and severity, and recent attack history. Patient-reported outcomes were collected. Bivariate tests used were either the Student's t-test, the Fisher exact test, or Mann-Whitney U test. Results: Physicians (N = 67) provided data on 368 patients (92.4% HAE types I/II and 7.6% nC1-INH-HAE). Physicians reported that a higher proportion of patients with nC1-INH-HAE had moderate or high disease activity and moderate or severe disease severity both at diagnosis and at data collection versus those with HAE types I/II. Patients with nC1-INH-HAE versus patients with HAE types I/II experienced increased attack severity (34.6% versus 4.4%) and hospitalization rate during the most recent attack (39.3% versus 6.6%), and reported lower health status and quality of life, via the European Quality of Life 5 Dimension 5 Level (US tariff) and Angioedema Quality of Life, respectively. On average, 25% of the patients with nC1-INH-HAE reported absenteeism and work or activity impairment due to HAE compared with 2.7% of patients with HAE types I/II. Both patient groups reported improvements in disease activity and severity from diagnosis to the time of data collection. Conclusion: These real-world findings suggest that patients with nC1-INH-HAE have increased disease activity and severity, and experience greater impairment to their quality of life, work, and daily functioning than patients with HAE types I/II. Powered statistical analyses are required to confirm these findings.

Beneficiary Experience of Care by Level of Integration in Dual Eligible Special Needs Plans.

Importance: Dual Eligible Special Needs Plans (D-SNPs) are private managed care plans designed to promote Medicare and Medicaid integration for full-benefit, dually eligible beneficiaries. Currently, the highest level of D-SNP integration occurs in plans with exclusively aligned enrollment (EAE). Objective: To compare patient experience of care, out-of-pocket spending, and satisfaction among dually enrolled Medicaid beneficiaries in D-SNPs with EAE, those in D-SNPs without EAE, and those with traditional Medicare. Design, Setting, and Participants: This cross-sectional study included respondents to a mail survey fielded to a stratified random sample of full-benefit, community-dwelling, dual-eligible Medicaid beneficiaries who qualified for receipt of home and community-based services in the Virginia Medicaid Commonwealth Coordinated Care Plus program between March and October 2022. Exposure: Enrollment in a D-SNP with EAE or a D-SNP without EAE vs traditional Medicare. Main Outcomes and Measures: The main outcomes were self-reported measures of access and delays in receiving plan approvals, out-of-pocket spending, and satisfaction with health plans' customer service and choice of primary care and specialist physicians. Results: Of 7200 surveys sent, 2226 were completed (response rate, 30.9%). The analytic sample consisted of 1913 Medicaid beneficiaries with nonmissing data on covariates (mean [SD] age, 70.8 [15.6] years; 1367 [71.5%] female). Of these, 583 (30.5%) were enrolled in D-SNPs with EAE, 757 (39.6%) in D-SNPs without EAE, and 573 (30.0%) in traditional Medicare. Compared with respondents enrolled in D-SNPs without EAE, those in D-SNPs with the highest level of integration (EAE) were 6.77 percentage points (95% CI, 8.81-12.66 percentage points) more likely to report being treated with courtesy and respect and 5.83 percentage points (95% CI, 0.21-11.46 percentage points) more likely to know who to call when they had a health problem. No statistically significant differences were found between members in either type of D-SNP and between those in D-SNPs and traditional Medicare in terms of their difficulty accessing care, delays in care, and satisfaction with care coordination and physician choice. Conclusions and Relevance: This cross-sectional study found some benefits of integrating administrative processes under Medicare and Medicaid but suggests that care coordination and access improvements under full integration require additional time and/or efforts to achieve.

Misdiagnosis of amyotrophic lateral sclerosis in clinical practice in Europe and the USA: a patient chart review and physician survey.

OBJECTIVE: Delays in amyotrophic lateral sclerosis (ALS) diagnosis can result in compromised disease management and unnecessary costs. We examined the extent of ALS misdiagnosis in the US and Europe. METHODS: Data were collected via the Adelphi ALS Disease Specific Programme™, a cross-sectional survey of physicians and a medical chart review of their consulting patients with ALS in France, Germany, Italy, Spain, the UK (EU5), and the US. Between July 2020 and March 2021, eligible physicians (primary speciality neurology, active involvement in managing patients with ALS) abstracted data from patients (≥18 years old) with confirmed ALS. RESULTS: Overall, 138 physicians completed the survey (EU5 107, US 31), with data reviewed from 795 patient medical charts (EU5 568, US 227); 278 (35.0%) patients (EU5 183 [32.2%], US 95 [41.9%]) had received ≥1 initial misdiagnosis based on symptoms later attributed to ALS. Mean (SD) time from symptom onset to first healthcare professional consultation was 3.8 (5.2) months (EU5 4.3 [4.8] months, US 2.6 [5.8] months). Mean (SD) time from symptom onset to ALS diagnosis was 8.2 (12.5) months (EU5 9.6 [14.0] months, US 5.0 [6.8] months) and increased to 10.4 (17.9) for patients with a misdiagnosis (compared with 6.9 [7.2] for patients with no misdiagnosis). Physician-identified barriers to timely ALS diagnosis included the similarity of symptoms to other conditions and delayed referral to neurologists. CONCLUSIONS: Misdiagnosis of ALS is frequent, with a protracted diagnostic pathway. Targeted education of patients and physicians about signs and symptoms and benefits of prompt referral to multidisciplinary care are needed.

Pegcetacoplan in paroxysmal nocturnal haemoglobinuria: Its use, its clinical effectiveness, and its influence on health-related quality of life and productivity.

OBJECTIVES: To describe real-world use/effectiveness of pegcetacoplan (PEG) in paroxysmal nocturnal haemoglobinuria (PNH). METHODS: Data were drawn from the Adelphi PNH Disease Specific Programme™, a cross-sectional survey conducted in France, Italy, Germany, Spain and the United States from January to November 2022. Patients had a confirmed PNH diagnosis and received PEG for ≥1 month. Physicians reported patient characteristics, treatment use/satisfaction and their perception of patients' fatigue and health-related quality of life (HRQoL). Patients reported treatment satisfaction and completed questionnaires assessing fatigue, HRQoL and productivity. Descriptive statistics were reported. RESULTS: Overall, 14 physicians provided data for 61 patients who had received 1080 mg/dose PEG for 1.3-14.8 months. At data collection compared to PEG initiation: haemoglobin was 2.5 g/dL higher on average; proportion of patients with lactate dehydrogenase (LDH) ≥1.5 × upper limit of normal was reduced by 27.4%; physician-perceived fatigue was lower and HRQoL better. Physician- and patient-reported treatment satisfaction was high for >90% of patients. Physicians and patients were more satisfied with PEG than previously prescribed C5 complement inhibitors. Mean work impairment and activity impairment in the 7 days prior to data collection were 32.9% and 22.4%, respectively. CONCLUSIONS: These real-world data support the effectiveness of PEG through positive effects on haemoglobin, LDH, fatigue and HRQoL.

Time from amyotrophic lateral sclerosis symptom onset to key disease milestones: analysis of data from a multinational cross-sectional survey.

OBJECTIVE: To determine the average time from Amyotrophic Lateral Sclerosis (ALS) symptom onset to 11 pre-defined milestones, overall and according to ALS progression rate and geographic location. METHODS: Data were drawn from the Adelphi Real World ALS Disease-Specific ProgrammeTM, a point-in-time survey of neurologists caring for people living with ALS (pALS) conducted in France, Germany, Italy, Spain, the United Kingdom and the United States from 2020-2021. ALS progression rate was calculated using time since symptom onset and ALS Functional Rating Scale Revised score. RESULTS: Survey results were available for N = 1003 pALS (progression rate for N = 867). Mean time from symptom onset was 3.8 months to first consultation, 8.0 months to diagnosis, 16.2 months to employment change (part-time/sick leave/retirement/unemployment), 17.5 months to use of a walking aid, 18.5 months to first occurrence of caregiver support, 22.8 months to use of a wheelchair, 24.6 months to use of a communication aid, 27.3 months to use of a respiratory aid, 28.6 months to use of gastrostomy feeding, 29.7 months to use of eye gaze technology and 30.3 months to entering a care facility. Multivariate analysis indicated significant effects of fast (versus slow) progression rate on time to reach all 11 milestones, as well as US (versus European) location, age, body mass index and bulbar onset (versus other) on time to reach milestones. CONCLUSIONS: pALS rapidly reached clinical and disease-related milestones within 30 months from symptom onset. Milestones were reached significantly faster by pALS with fast versus slow progression. Geographic differences were observed.

Improving Identification of Medicaid Eligible Community-Dwelling Older Adults in Major Household Surveys with Limited Income or Asset Information.

Analysis of public policy affecting dual eligibles requires accurate identification of survey respondents eligible for both Medicare and Medicaid. Doing so for Medicaid is particularly challenging given the complex eligibility rules tied to income and assets. In this paper we provide guidance on how to best identify eligible respondents in household surveys that have limited income or asset information, such as the National Health Interview Survey (NHIS), American Community Survey (ACS), Current Population Survey (CPS), and Medical Expenditure Panel Survey (MEPS). We show how two types of errors-false negative and false positive errors-are impacted by incorporating limited income or asset information, relative to the commonly-used approach of solely comparing total income to the income threshold. With the 2018 Health and Retirement Study (HRS), which has detailed income and asset information, we mimic the income and asset information available in those other household surveys and quantify how errors change when imposing income or asset tests with limited information. We show that incorporating all available income and asset data results in the lowest number of errors and the lowest overall error rates. We recommend that researchers adjust income and impose the asset test to the fullest extent possible when imputing Medicaid eligibility for Medicare enrollees.

Healthcare resource utilization at different stages of amyotrophic lateral sclerosis: Results from a real-world survey.

People with amyotrophic lateral sclerosis (pALS) require complex, multi-disciplinary care, resulting in extensive healthcare resource utilization (HCRU). To investigate the relationship between HCRU and ALS progression, the study objectives were (i) to characterize HCRU in pALS and (ii) to establish whether this varied according to disease stage, as defined using three different methodologies: neurologist-defined early/mid/late stage, the King's clinical staging system for ALS, and the Milan Torino Staging system for ALS (MiToS). Real-world data were drawn from the Adelphi ALS Disease-Specific Programme™, a point-in-time survey of neurologists in France, Germany, Italy, Spain, the UK, and the USA conducted July 2020-March 2021. The analysis included survey responses from 142 physicians with respect to 880 pALS. With advancing ALS stage, significant differences were observed in the number of healthcare professional consultations and X-rays per person (both p < 0.05 for all staging systems), and the proportion of pALS with emergency room admissions, intensive care unit admissions, and assisted ventilation (all p < 0.05 for all staging systems). Across stages, >55% of pALS received care from a general neurologist and a general/primary care practitioner. With increasing stage, there was a significant difference in the proportion receiving care from a physical therapist, pulmonologist/respiratory care practitioner, respiratory therapist, speech/language therapist, and palliative care team, and in the proportion receiving care only from professional caregivers (all p < 0.05 for all staging systems). This study confirmed the substantial HCRU required to support pALS through all stages of ALS and highlighted an increasing need for healthcare resources as the disease progresses.

The impact of Medicaid expansion on spending and utilization by older low-income Medicare beneficiaries.

OBJECTIVE: To examine indirect spillover effects of Affordable Care Act (ACA) Medicaid expansions to working-age adults on health care coverage, spending, and utilization by older low-income Medicare beneficiaries. DATA SOURCES: 2010-2018 Health and Retirement Study survey data linked to annual Medicare beneficiary summary files. STUDY DESIGN: We estimated individual-level difference-in-differences models of total spending for inpatient, institutional outpatient, physician/professional provider services; inpatient stays, outpatient visits, physician visits; and Medicaid and Part A and B Medicare coverage. We compared changes in outcomes before and after Medicaid expansion in expansion versus nonexpansion states. DATA COLLECTION/EXTRACTION METHODS: The sample included low-income respondents aged 69 and older with linked Medicare data, enrolled in full-year traditional Medicare, and residing in the community. PRINCIPAL FINDINGS: ACA Medicaid expansion was associated with a 9.8 percentage point increase in Medicaid coverage (95% CI: 0.020-0.176), a 4.4 percentage point increase in having any institutional outpatient spending (95% CI: 0.005-0.083), and a positive but statistically insignificant 2.4 percentage point change in Part B enrollment (95% CI: -0.003 to 0.050, p = 0.079). CONCLUSIONS: ACA Medicaid expansion was associated with more institutional outpatient spending among older low-income Medicare beneficiaries. Increased care costs should be weighed against potential benefits from increased realized access to care.

Use of Home and Community-Based Services After Implementation of Medicaid Managed Long Term Services and Supports in Virginia.

Many state Medicaid programs contract with managed care organizations to deliver long-term services and supports (LTSS) to seniors and persons with disabilities. Managed LTSS (MLTSS) programs are often intended to increase access to and utilization of home- and community-based services (HCBS), yet there are few empirical studies of their effects. In this retrospective observational study, we used administrative data from Virginia Medicaid to compare HCBS waiver enrollment and service utilization pre- and post-implementation of MLTSS. Compared to the prior fee-for-service system, Medicaid beneficiaries with long-term care needs who were enrolled in Virginia's MLTSS program were more likely to be enrolled in Virginia's 1915(c) waivers for home and community-based services. Further, the likelihood of using personal care increased by nearly 5%, and the likelihood of using respite care increased by about 10%. These findings are pertinent to ongoing policy changes that use private managed care organizations to deliver long-term services and supports to seniors and persons with disabilities. Policymakers in states and the federal government should note these initial increases in service use under Medicaid MLTSS, while supporting evaluations of the long-term impacts of MLTSS on HCBS use and beneficiary health and satisfaction.

Effects of a Medicaid dental coverage "cliff" on dental care access among low-income Medicare beneficiaries.

OBJECTIVE: To evaluate how an abrupt drop-off, or "cliff," in Medicaid dental coverage affects access to dental care among low-income Medicare beneficiaries. Medicaid is an important source of dental insurance for low-income Medicare beneficiaries, but beneficiaries whose incomes slightly exceed eligibility thresholds for Medicaid have fewer affordable options for dental coverage, resulting in a dental coverage cliff above these thresholds. DATA SOURCE: Medicare Current Beneficiary Surveys (MCBS) from 2016 to 2019. STUDY DESIGN: We used a regression discontinuity design to evaluate effects of this dental coverage cliff. This study design exploited an abrupt difference in Medicaid coverage above income eligibility thresholds in the Medicaid program for elderly and disabled populations. DATA COLLECTION: The study included low-income community-dwelling Medicare beneficiaries surveyed in the MCBS whose incomes, measured in percentage points of the federal poverty level, were within ±75 percentage points of state-specific Medicaid income eligibility thresholds (n = 7508 respondent-years, which when weighted represented 26,776,719 beneficiary-years). PRINCIPAL FINDINGS: Medicare beneficiaries whose income exceeded Medicaid eligibility thresholds were 5.0 percentage points more likely to report difficulty accessing dental care due to cost concerns or a lack of insurance than beneficiaries below the thresholds (95% CI: 0.2, 9.8; p = 0.04)-a one-third increase over the proportion reporting difficulty below the thresholds (15.0%). CONCLUSIONS: A Medicaid dental coverage cliff exacerbates barriers to dental care access among low-income Medicare beneficiaries. Expanding dental coverage for Medicare beneficiaries, particularly those who are ineligible for Medicaid, could alleviate barriers to dental care access that result from the lack of comprehensive dental coverage in Medicare.

Examining Medicaid Participation and Medicaid Entry Among Senior Medicare Beneficiaries With Linked Administrative and Survey Data.

Because Medicare beneficiaries can qualify for Medicaid through several pathways, duals who newly enroll in Medicaid may have experienced various financial and/or health changes that impact their Medicaid eligibility. Alternatively, new enrollment could reflect changes in awareness of the program among those previously eligible. Using monthly enrollment data linked to Health and Retirement Study survey data, we examine financial and health changes that occur around the time new Medicaid participants enter the program, and we compare those with changes experienced by both those continuously enrolled in Medicaid and those not enrolled. We find that Medicaid entry is often timed with a marked increase in out-of-pocket medical expenses, a substantial decrease in assets for some, and increases in activities of daily living (ADL) limitations. We also observe financial changes among persons continuously enrolled in Medicaid. Our results inform discussions about Medicaid eligibility policies and potential gaps in the protection that Medicaid offers from financial risk.

The Impact of Recent State and Local Minimum Wage Increases on Nursing Facility Employment.

Various U.S. states and municipalities raised their mandated minimum wages between 2017 and 2019. In some areas, minimum wages became high enough to bind for more professional workers, such as lower paid staff at nursing facilities. We add to the small prior literature on the effects of minimum wages on nursing facility staffing using novel establishment-level data on daily hours worked; these data allow us to examine changes in staffing hours along margins previously unexplored in the minimum wage literature. We find no evidence that minimum wage increases reduced hours worked among lower-paid nurses in nursing facilities. In contrast, we find that increases in state and local minimum wages increased hours worked per resident day by nursing assistants; increases occurred for the average of all days throughout the month and on weekend days. We also find that a higher minimum wage increased the share of days in the month that facilities meet at least 75% of the minimum recommended levels of staffing for nursing assistants. These results lessen concerns that minimum wage hikes may reduce the quality of resident care at nursing facilities.

Differences In Care Between Special Needs Plans And Other Medicare Coverage For Dual Eligibles.

Policy makers are pursuing strategies to integrate Medicare and Medicaid coverage for people enrolled in both programs, who are known as dual eligibles. Dual Eligible Special Needs Plans (D-SNPs) are Medicare Advantage plans that exclusively serve this population, with several features intended to enhance care and facilitate integration with Medicaid. This study compared access to, use of, and satisfaction with care among dual eligibles enrolled in D-SNPs versus those enrolled in two other forms of Medicare coverage: other Medicare Advantage (MA) plans not exclusively serving dual eligibles and traditional Medicare. Compared with those in traditional Medicare, dual eligibles generally reported greater access to care, preventive service use, and satisfaction with care in D-SNPs. However, we found fewer differences in these outcomes among dual eligibles in D-SNPs versus other MA plans. Compared with non-Hispanic White dual eligibles, dual eligibles of color (for example, those identifying as Black or Hispanic) were less likely to report receiving better care in D-SNPs versus other Medicare coverage. These findings suggest that D-SNPs altogether have not provided consistently superior or more equitable care, and they highlight areas where federal and state policy could strengthen incentives for D-SNPs to improve care.

Association of Medicaid Expansion With Medicaid Enrollment and Health Care Use Among Older Adults With Low Income and Chronic Condition Limitations.

Importance: Medicaid is an important source of supplemental coverage for older Medicare beneficiaries with low income. Research has shown that Medicaid expansion under the Patient Protection and Affordable Care Act (ACA) was associated with increased Medicaid coverage for previously eligible older adults with low income, but there has been little research on whether their health care use increased or whether such changes differed by beneficiaries' health status. Objective: To assess whether the ACA Medicaid expansion to working-age adults was associated with increased Medicaid enrollment and health care use among older adults with low income with and without chronic condition limitations. Design Setting and Participants: This cross-sectional study used data from the National Health Interview Survey from 2010 to 2017 for adults 65 years or older with low income (≤100% of the federal poverty level). Data were analyzed from November 2020 to March 2022. Exposure: Residence in a state with Medicaid expansion for working-age adults. Main Outcomes and Measures: The main outcomes were Medicaid coverage and health care use, measured by physician office visits and inpatient hospital care. Survey weights were used in calculating descriptive statistics and regression estimates. In multivariate analysis, difference-in-differences models were used to compare changes in outcomes over time between respondents in Medicaid expansion states and respondents in nonexpansion states. Results: Of 21 859 adults included in the study, 7153 had chronic condition limitations (4983 [70.1%] female; mean [SD] age, 76.0 [0.1] years) and 14 706 did not have chronic condition limitations (9609 [66.3%] female; mean [SD] age, 74.85 [0.08] years). Of those with chronic condition limitations, 2707 (36.7%) were enrolled in Medicaid, 2816 (39.4%) had an office visit in the past 2 weeks, and 2152 (30.7%) used inpatient hospital care in the past year. Medicaid expansion was associated with differential increases in the likelihood of having Medicaid (4.92 percentage points; 95% CI, 0.25-9.60 percentage points; P = .04) and having an office visit in the past 2 weeks (5.31 percentage points; 95% CI, 0.10-10.51 percentage points; P = .046) compared with nonexpansion. There were no differential changes between expansion and nonexpansion states in receipt of inpatient hospital care (-0.62 percentage points; 95% CI, -5.39 to 4.14 percentage points; P = .79). Among adults without chronic condition limitations, 3159 (19.8%) were enrolled in Medicaid, and no differential changes between expansion and nonexpansion states in Medicaid enrollment (-0.24 percentage points; 95% CI, -3.06 to 2.57 percentage points; P = .86) or health care use were found. Conclusions and Relevance: In this cross-sectional study, ACA Medicaid expansion for working-age adults was associated with increased Medicaid enrollment and outpatient health care use among older adults with low income and chronic condition limitations who were dually eligible for Medicare and Medicaid.

The Burden of Progressive Supranuclear Palsy on Patients, Caregivers, and Healthcare Systems by PSP Phenotype: A Cross-Sectional Study.

Progressive supranuclear palsy (PSP) is a rare, relentlessly progressive, ultimately fatal neurodegenerative brain disease. The objective of this study was to assess the burden of PSP on patients, caregivers, and healthcare systems by PSP phenotype. Data were drawn from the Adelphi PSP Disease Specific Programme™, a cross-sectional study of neurologists and people living with PSP in the United States of America, France, Germany, Italy, Spain, and the United Kingdom. All people living with PSP with a reported phenotype were included. PSP phenotype was reported for 242 patients (mean age: 70.2 years, 58% male): PSP-Richardson's syndrome, n = 96; PSP-predominant Parkinsonism, n = 88; PSP-predominant corticobasal syndrome, n = 28; PSP-predominant speech/language disorder, n = 12; PSP-progressive gait freezing, n = 9; PSP-predominant frontal presentation, n = 9. Most patients reported impaired cognitive, motor, behavioral and ocular functionality; 67-100% of patients (across phenotypes) had moderate-to-severe disease at the time of data collection. Post-diagnosis, the majority were provided with a visual and/or mobility aid (55-100%, across phenotypes), and/or required home modification to facilitate their needs (55-78%, across phenotypes). Patients required multiple types of healthcare professionals for disease management (mean 3.6-4.4, across phenotypes), and the majority reported receiving care from at least one caregiver (mean 1.3-1.8, across phenotypes). There is a high burden on patients, caregivers, and healthcare systems across all PSP phenotypes. Although phenotypes manifest different symptoms and are associated with different diagnostic pathways, once diagnosed with PSP, patients typically receive similar care.

Increasing Medicaid's Stagnant Asset Test For People Eligible For Medicare And Medicaid Will Help Vulnerable Seniors.

Low-income Medicare beneficiaries rely on Medicaid for supplemental coverage but must meet income and asset tests to qualify. We examined states' income and asset tests for full-benefit Medicaid during the period 2006-18 and examined how alternative asset tests would affect eligibility for community-dwelling Medicare beneficiaries ages sixty-five and older. Most states have not updated the dollar limit of Medicaid's asset test since 1989, making the asset test increasingly restrictive in inflation-adjusted terms. We estimated that increasing Medicaid's asset limit by the Consumer Price Index, to Medicare Savings Program levels, or to $10,000 for individuals and $20,000 for couples would increase Medicaid eligibility by 1.7 percent, 4.4 percent, and 7.5 percent, respectively. Simplifying Medicaid's asset test to focus only on certain high-value assets would increase eligibility by 20.5 percent. Increasing asset limits would lessen restrictions on Medicaid eligibility that arise from stagnant asset tests, broadening eligibility for certain low-income Medicare beneficiaries and allowing them to retain higher, yet still modest, savings.

Welcome Mats and On-Ramps for Older Adults: The Impact of the Affordable Care Act's Medicaid Expansions on Dual Enrollment in Medicare and Medicaid.

For many low-income Medicare beneficiaries, Medicaid provides important supplemental insurance that covers out-of-pocket costs and additional benefits. We examine whether Medicaid participation by low-income adults age 65 and up increased as a result of Medicaid expansions to working-age adults under the Affordable Care Act (ACA). Previous literature documents so-called "welcome mat" effects in other populations but has not explicitly studied older persons dually eligible for Medicare and Medicaid. We extend this literature by estimating models of Medicaid participation among persons age 65 and up using American Community Survey data from 2010 to 2017 and state variation in ACA Medicaid expansions. We find that Medicaid expansions to working-age adults increased Medicaid participation among low-income older adults by 1.8 percentage points (4.4 percent). We also find evidence of an "on-ramp" effect; that is, low-income Medicare beneficiaries residing in expansion states who were young enough to gain coverage under the 2014 ACA Medicaid expansions before aging into Medicare were 4 percentage points (9.5 percent) more likely to have dual Medicaid coverage relative to similar individuals who either turned 65 before the 2014 expansions or resided in non-expansion states. This on-ramp effect is an important mechanism behind welcome mat effects among some older adults.

Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington's Disease.

Background: Chorea is recognized as a prototypic motor feature of Huntington's disease (HD), but its effect on health-related quality of life (HRQoL) has not been fully explored. This study describes the impact of chorea on HRQoL in patients with HD. Objective: To determine the impact of HD-related chorea on employment, self-care activities, activities of daily living, and health-care resource utilization (HCRU). Methods: Data were drawn from the Adelphi HD Disease Specific Programme, a real-world point-in-time survey of 144 neurologists and 427 patients in the United States between July and October 2017. HD patients with and without chorea were identified and examined for differences in employment status, reasons for employment changes, self-care activities, and modifications to cope with involuntary movements. Bivariate tests and inverse probability weighted regression adjustment methods were used to determine differences in outcomes between patients with and without chorea. Results: HD patients with (n=287) and without (n=140) chorea were identified. Patients with chorea were less likely to be employed full-time (16.7% vs 25.7%; P<0.04) and more likely to be on long-term sick leave (17.4% vs 5.0%; P<0.01). The onset of motor symptoms in HD-related chorea patients coincided with a change in employment status (42.7% vs 20.8%; P<0.01). Among those still working (n=145), more than two-fifths of patients with chorea required changes to their workplace and required these changes more frequently (45% vs 17%; P<0.001). HD patients with chorea required aid to help them get around significantly more frequently than those without chorea (55% vs 34%; P<0.001). Discussion: These results demonstrate that HD patients with chorea experienced greater negative impact to employment, self-care activities, and HCRU than patients without chorea experienced. These patients were more likely to stop working due to motor, cognitive, and behavioral symptoms; require modifications in the home and workplace; and need more assistance from caregivers than patients without chorea. Conclusions: Patients with HD-related chorea have greater detriments to emotional, interpersonal, and professional functioning that could be improved by reducing chorea.

Disease course and treatment patterns in progressive supranuclear palsy: A real-world study.

BACKGROUND: Progressive supranuclear palsy (PSP) is a neurodegenerative disorder with symptoms including vertical gaze palsy, frequent falls, abnormal gait, and cognitive/language/behavioral changes, making diagnosis and treatment challenging. METHODS: Descriptive analysis was undertaken of cross-sectional, real-world data for patients with PSP provided by neurologists in France, Germany, Italy, Spain, UK, and USA. RESULTS: Data on 892 PSP patients were obtained from patient records. Common initial symptoms included difficulty walking/maintaining gait, confusion/disorientation, loss of balance/falling, and rigidity. These symptoms and vertical gaze palsy commonly aided diagnosis. At data collection, dysphagia and blepharospasm were also very common. Mean times from symptom-onset to consulting a healthcare professional and PSP diagnosis were 5.2 and 15.0 months, respectively. General practitioners or movement disorder specialists were most commonly consulted initially; 98% of patients were diagnosed with PSP by a movement disorder specialist or general neurologist. Alternative diagnoses, including Parkinson's disease (67%) and dementia (10%), were considered for 41% of patients prior to PSP diagnosis. Non-wheelchair walking aids and wheelchairs were used by 60% and 23% of patients, respectively, with mean times from symptom-onset to use being 20.8 and 39.5 months, respectively. Symptomatic medication, most often levodopa and antidepressants, was prescribed for 87% of patients. CONCLUSION: This study provided information on disease course and treatment for a large number of PSP patients from various countries. PSP carries a considerable clinical burden. Diagnosis is often delayed. Consulting a movement disorder specialist might expediate diagnosis. Currently, only symptomatic treatments are available with a poor satisfaction, and there is an urgent need for disease-modifying agents.

Misclassification of Medicaid Participation by Dual Eligibles: Evidence From the Medicare Current Beneficiary Survey.

Previous studies show that survey-based reports of Medicaid participation are measured with error, but no prior study has examined measurement error in an important segment of the Medicaid population-low-income adults enrolled in Medicare. Using the Medicare Current Beneficiary Survey, we examine whether respondent self-reports of Medicaid enrollment match administrative records and present several key findings. First, among low-income Medicare beneficiaries, the false negative rate is 11.5% when the self-report is interpreted as full Medicaid and 3.7% when the self-report is interpreted as full or partial Medicaid. Second, the likelihood of a false negative report is systematically associated with respondent traits. Third, systematic measurement error results in biased coefficient estimates in models of Medicaid participation defined from self-reports, and the bias is more significant when the researcher interprets self-reports as full Medicaid coverage only. Researchers should use caution when interpreting survey reports as pertaining to full Medicaid coverage only.