How do surrogates make treatment decisions for patients with dementia: An experimental survey study.

Despite the growing need for surrogate decision-making for older adults, little is known about how surrogates make decisions and whether advance directives would change decision-making. We conducted a nationally representative experimental survey that cross-randomized cognitive impairment, gender, and characteristics of advance care planning among hospitalized older adults through a series of vignettes. Our study yielded three main findings: first, respondents were much less likely to recommend life-sustaining treatments for patients with dementia, especially after personal exposure. Second, respondents were more likely to ignore patient preferences for life-extending treatment when the patient had dementia, and choose unwanted life-extending treatments for patients without dementia. Third, in scenarios where the patient's wishes were unclear, respondents were more likely to choose treatments that matched their own preferences. These findings underscore the need for improved communication and decision-making processes for patients with cognitive impairment and highlight the importance of choosing a surrogate decision-maker with similar treatment preferences.

Using Address Data to Track Household Financial Burden of Disease.

The financial burden of illness cannot be correctly characterized without accounting for the impacts across healthy and sick members of a household. Currently, we have very few large, nationally representative data resources to facilitate such work. This paper describes ways to move the field forward through a novel application of address data.

Marijuana legalization and disability claiming.

We study the effect of recent legalization of recreational marijuana use laws (RMLs) in the United States on new applications and allowances for Social Security Disability Insurance and Supplemental Security Income over the period 2001-2019. We combine administrative caseload data from the Social Security Administration with state policy changes using two-way fixed-effects methods. We find that RML adoption increases applications for both benefits. However, there is no change in allowances post-RML. We provide suggestive evidence that the observed changes in applications post-RML are driven by increases in marijuana misuse and selective migration, and decreases in unemployment.

"It still affects our economic situation": long-term economic burden of breast cancer and lymphedema.

PURPOSE: Financial toxicity after breast cancer may be exacerbated by adverse treatment effects, like breast cancer-related lymphedema. As the first study of long-term out-of-pocket costs for breast cancer survivors in the USA with lymphedema, this mixed methods study compares out-of-pocket costs for breast cancer survivors with and without lymphedema. METHODS: In 2015, 129 breast cancer survivors from Pennsylvania and New Jersey completed surveys on demographics, economically burdensome events since cancer diagnosis, cancer treatment factors, insurance, and comorbidities; and prospective monthly out-of-pocket cost diaries over 12 months. Forty participants completed in-person semi-structured interviews. GLM regression predicted annual dollar amount estimates. RESULTS: 46.5% of participants had lymphedema. Mean age was 63 years (SD = 8). Average time since cancer diagnosis was 12 years (SD = 5). Over 98% had insurance. Annual adjusted health-related out-of-pocket costs excluding productivity losses totaled $2306 compared to $1090 (p = 0.006) for those without lymphedema, or including productivity losses, $3325 compared to $2792 (p = 0.55). Interviews suggested that the cascading nature of economic burden on long-term savings and work opportunities, and insufficiency of insurance to cover lymphedema-related needs drove cost differences. Higher costs delayed retirement, reduced employment, and increased inability to access lymphedema care. CONCLUSIONS: Long-term cancer survivors with lymphedema may face up to 112% higher out-of-pocket costs than those without lymphedema, which influences lymphedema management, and has lasting impact on savings and productivity. Findings reinforce the need for actions at policy, provider, and individual patient levels, to reduce lymphedema costs. Future work should explore patient-driven recommendations to reduce economic burden after cancer.

Kidney offer acceptance at programs undergoing a Systems Improvement Agreement.

In the United States, the Centers for Medicare and Medicaid Services (CMS) use Systems Improvement Agreements (SIAs) to require transplant programs repeatedly flagged for poor-performance to improve performance or lose CMS funding for transplants. We identified 14 kidney transplant (KT) programs with SIAs and 28 KT programs without SIAs matched on waitlist volume and characterized kidney acceptance using SRTR data from 12/2006-3/2015. We used difference-in-differences linear regression models to identify changes in acceptance associated with an SIA independent of program variation and trends prior to the SIA. SIA programs accepted 26.9% and 22.1% of offers pre- and post-SIA, while non-SIA programs accepted 33.9% and 44.4% of offers in matched time periods. After adjustment for donor characteristics, time-varying waitlist volume, and secular trends, SIAs were associated with a 5.9 percentage-point (22%) decrease in kidney acceptance (95% CI: -10.9 to -0.8, P = .03). The decrease in acceptance post-SIA was more pronounced for KDPI 0-40 kidneys (12.3 percentage-point decrease, P = .007); reductions in acceptance of higher KDPI kidneys occurred pre-SIA. Programs undergoing SIAs substantially reduced acceptance of kidney offers for waitlisted candidates. Attempts to improve posttransplant outcomes might have the unintended consequence of reducing access to transplantation as programs adopt more restrictive organ selection practices.

Reported effects of the Scientific Registry of Transplant Recipients 5-tier rating system on US transplant centers: results of a national survey.

In the United States, the Scientific Registry of Transplant Recipients (SRTR) provides publicly available quality report cards. These reports have historically rated transplant programs using a 3-tier system. In 2016, the SRTR temporarily transitioned to a 5-tier system, which classified more programs as under-performing. As part of a larger survey about transplant quality metrics, we surveyed members of the American Society of Transplant Surgeons and American Society of Transplantation (N = 280 respondents) on transplant center experiences with patient and payer responses to the 5-tier SRTR ratings. Over half of respondents (n = 137, 52.1%) reported ≥1 negative effect of the new 5-tier ranking system, including losing patients, losing insurers, increased concern among patients, and increased concern among referring providers. Few respondents (n = 35, 13.7%) reported any positive effects of the 5-tier ranking system. Lower SRTR-reported scores on the 5-tier scale were associated with increased risk of reporting at least one negative effect in a logistic model (P < 0.01). The change to a more granular rating system provoked an immediate response in the transplant community that may have long-term implications for transplant hospital finances and patient options for transplantation.

Is there an advantage? Considerations for researchers studying the effects of the type of Medicare coverage.

OBJECTIVE: To describe common methodological problems that arise in comparisons of Medicare Advantage (MA) and Traditional Medicare (TM) and within-MA studies and provide suggestions of how researchers can address these issues. STUDY SETTING: Published research evaluating Medicare coverage options in the United States. STUDY DESIGN: We considered key conceptual challenges and promising solutions that have been used thus far and suggest additional directions. DATA COLLECTION: Not available. PRINCIPAL FINDINGS: Many existing studies of MA versus TM include significant limitations, such as failing to account for unobserved confounders driving both beneficiary coverage choice and health outcomes once enrolled, not accounting for variation in benefit generosity, provider networks, or plan design across MA plans, and/or having been conducted at a time when MA enrollment was less than a third of all Medicare beneficiaries. We provide a review of methods that can help researchers to overcome these weaknesses and suggest additional methods and data sources that may aid future research. CONCLUSIONS: The MA program is becoming an essential part of the US healthcare system. By accounting for non-random movement into and out of MA and studying the heterogeneity of beneficiary experience across plan and market characteristics, researchers can provide the high-quality evidence necessary for policymakers to design the program and reform TM in ways that maximize beneficiary outcomes.

The impact of Covid-19 on older workers' employment and Social Security spillovers.

The COVID-19 pandemic represents a major threat to health and economic well-being in the USA, especially for older and disabled workers, and may spill over onto Social Security. We use individual-level from the Current Population Survey, state-level monthly Social Security administrative data on disability benefit applications, and national-level monthly data on Social Security retirement benefit applications to assess the impact of the pandemic on older adults' employment and benefit claiming. State-level monthly Google Trends data are used as a leading indicator of future claiming in the population. We find that employment for older workers dropped substantially more than would have been predicted prior to the pandemic: employment for 50-61-year-olds was 5.7 pp (8.3 percent) lower, while employment for 62-70-year-olds was 3.9 pp (10.7 percent) lower. We find declines in labor force exit due to disability (4-5 percent), applications for disability insurance (15 percent), the average age of disability program applicants, and Google searches for disability (7 percent). We contrast with prior periods of economic downturn and explore potential mechanisms, finding evidence for both supply- and demand-side explanations. Supplementary information: The online version contains supplementary material available at 10.1007/s00148-022-00915-z.

Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life.

Background and Objectives: The clinical progression of severe dementia frequently leads to situations where surrogate decision makers must quickly make choices about potentially burdensome treatments that offer limited clinical benefit. We examined whether the number of decision makers and their access to advance directives were related to treatment choice for patients with severe dementia in comparison to those with normal cognition. Research Design and Methods: We retrospectively linked survey responses about end-of-life treatment decisions to Medicare claims for Health and Retirement Study respondents dying between 2002 and 2015 whose next-of-kin reported a need for surrogate decision making. We estimated multivariable logistic regression models to study measures of aggressive care in the last 6 months of life; in-hospital death, burdensome transfers, and burdensome treatments. Results: Compared to patients who were cognitively normal near the end of life (n = 1 198), patients with severe dementia (n = 722) were less likely to experience burdensome treatments (18% [95% confidence interval {CI} 14-21] vs 32% [95% CI 29-35]), burdensome transfers (20% [95% CI 17-24] vs 30% [95% CI 27-33]), and in-hospital death (24% [95% CI 20-28] vs 30% [95% CI 26-33]) when surrogates were involved. Rates of burdensome treatments, transfers, or in-hospital death for decedents with severe dementia did not vary with single versus multiple decision makers or when decision makers were informed by advance directives. However, among decedents with normal cognition, a single decision maker informed by an advance directive was associated with the lowest rates of burdensome treatments and in-hospital death. Discussion and Implications: Surrogate decision makers made similar choices around end-of-life care for patients with severe dementia regardless of the number of decision makers and availability of advance directives. However, both advance directives and single decision makers were associated with less aggressive care for cognitively normal decedents.

Treatment preferences among adults with normal cognition and cognitive impairment.

BACKGROUND: Although patient participation in treatment decisions is important for preference-concordant care delivery, it is largely unknown how cognitive impairment influences treatment preferences. We investigated whether treatment preferences for the care of serious illness differ between adults with and without cognitive impairment in hypothetical clinical scenarios. METHODS: Data from the 2018 Health and Retirement Study were used. The sample included 1291 self-respondents (201 respondents with cognitive impairment, and 1090 with normal cognition). We examined treatment preferences for life-extending, limited, and comfort care options in two hypothetical clinical scenarios where the respondent imagines a patient with (1) good physical health with severe cognitive impairment consistent with dementia; and (2) with physical impairment due to a heart attack, but normal cognition. Respondents specified whether they were unsure, or if they would want or not want each treatment option. Linear probability models were used to compare treatment preferences by cognitive status. RESULTS: Respondents with cognitive impairment were more likely to report that they were unsure about treatment options across both clinical scenarios compared to those with normal cognition. For the limited treatment option, cognitive impairment was associated with a lower rate of expressing a treatment preference by 7.3 (p = 0.070) and 8.5 (p = 0.035) percentage points for dementia and heart attack scenarios, respectively. Among those who articulated preferences, cognitive impairment was associated with a higher rate of preference for life-extending treatment in both dementia (30.1% vs. 20.0%, p = 0.044) and heart attack scenarios (30.0% vs. 20.2%, p = 0.033). CONCLUSIONS: Compared to those with normal cognition, cognitive impairment was associated with greater uncertainty about treatment preferences and higher rates of aggressive care preferences among those who specified preferences. Further research should assess whether preferences for aggressive care become more common as cognition declines in order to improve preference-concordant care delivery for patients with cognitive impairment.

Cancer's Lasting Financial Burden: Evidence From a Longitudinal Assessment.

BACKGROUND: The purpose of this study was to conduct a longitudinal analysis of out-of-pocket expenditure (OOPE) trajectories for the assessment of cancer's lasting financial impact. METHODS: We identified newly diagnosed cancer patients and constructed matched control group of noncancer participants from the 2002-2018 Health and Retirement Study. Outcomes included monthly OOPE for prescription drugs (RX-OOPE_MONTHLY) and OOPE for medical services other than drugs in the past 2 years (non-RX-OOPE_2YR), consumer debt, and new individual retirement account (IRA) withdrawals. Generalized linear models were used to compare OOPEs between cancer and matched control groups. Logistic regressions were used to compare household-level consumer debt or early IRA withdrawal. Subgroup analysis stratified patients by age, health status, and household income, with the low-income group stratified by Medicaid coverage. All statistical tests were 2-sided. RESULTS: The study cohort included 2022 cancer patients and 10 110 participants in the matched noncancer control group. Mean non-RX-OOPE_2YR of cancer patients was similar to that of participants in the matched control group before diagnosis but statistically significantly higher at diagnosis ($1157, P < .001), 2 ($511, P < .001) years, 4 ($360, P = .006) years, and 6 ($430, P = .01) years after diagnosis. A similar pattern was observed in RX-OOPE_MONTHLY. A statistically significantly higher proportion of cancer patients incurred consumer debt at diagnosis (34.5% vs 29.9%; P < .001) and 2 years after (32.5% vs 28.2%; P = .002). There was no statistically significant difference in new IRA withdrawals. Patients experienced lasting financial consequences following cancer diagnosis that were most pronounced among patients aged 65 years and older, in good-to-excellent health at baseline, and with low income, but without Medicaid coverage. CONCLUSIONS: Policies to reduce costs and expand insurance coverage options while reducing cost-sharing are needed.

Cancer Survivorship and Supportive Care Economics Research: Current Challenges and Next Steps.

BACKGROUND: Rapid growth in the number of cancer survivors raises numerous questions about health and economic outcomes among survivors along with their families, caregivers, and employers. Health economics theory and methods can contribute to many open questions to improve survivorship. METHODS: In this paper, we review key areas where more research is needed and describe strategies for improving data infrastructure, research funding, and capacity building to strengthen survivorship health economics research. CONCLUSIONS: Health economics has broadened an understanding of key supply- and demand-side factors that promote cancer survivorship. To ensure necessary research in survivorship health economics moving forward, we recommend dedicated funding, inclusion of health economics outcomes in primary data collection, and investments in secondary data sets.

Regional variation in the association between advance directives and end-of-life Medicare expenditures.

CONTEXT: It is unclear if advance directives (living wills) are associated with end-of-life expenditures and treatments. OBJECTIVE: To examine regional variation in the associations between treatment-limiting advance directive use, end-of-life Medicare expenditures, and use of palliative and intensive treatments. DESIGN, SETTING, AND PATIENTS: Prospectively collected survey data from the Health and Retirement Study for 3302 Medicare beneficiaries who died between 1998 and 2007 linked to Medicare claims and the National Death Index. Multivariable regression models examined associations between advance directives, end-of-life Medicare expenditures, and treatments by level of Medicare spending in the decedent's hospital referral region. MAIN OUTCOME MEASURES: Medicare expenditures, life-sustaining treatments, hospice care, and in-hospital death over the last 6 months of life. RESULTS: Advance directives specifying limits in care were associated with lower spending in hospital referral regions with high average levels of end-of-life expenditures (-$5585 per decedent; 95% CI, -$10,903 to -$267), but there was no difference in spending in hospital referral regions with low or medium levels of end-of-life expenditures. Directives were associated with lower adjusted probabilities of in-hospital death in high- and medium-spending regions (-9.8%; 95% CI, -16% to -3% in high-spending regions; -5.3%; 95% CI, -10% to -0.4% in medium-spending regions). Advance directives were associated with higher adjusted probabilities of hospice use in high- and medium-spending regions (17%; 95% CI, 11% to 23% in high-spending regions, 11%; 95% CI, 6% to 16% in medium-spending regions), but not in low-spending regions. CONCLUSION: Advance directives specifying limitations in end-of-life care were associated with significantly lower levels of Medicare spending, lower likelihood of in-hospital death, and higher use of hospice care in regions characterized by higher levels of end-of-life spending.

A Causal Estimate of Long-Term Health Care Spending Attributable to Body Mass Index Among Adults.

While high body mass index (BMI) is believed to be a major driver of poor health, there is little evidence about whether it leads to higher health care spending. Understanding the causal contribution of BMI to health care spending is necessary to estimate the returns to investment in weight loss efforts. We exploit genetic variation in BMI across siblings as a natural experiment to estimate the impact of BMI on cumulative third party and out-of-pocket health care spending among adults using the Panel Study of Income Dynamics data from 1999 through 2011. We estimate a two-stage residual inclusion model with a generalized linear model. We find a $611.60 increase in cumulative insurer spending for each one-unit increase in BMI. This amounts to $130.49 in mean annual spending, and is two times higher than the non-causal estimate. We find no difference in out-of-pocket spending by BMI. These findings suggest that having a higher BMI in young/middle adulthood leads to significantly higher insurer health expenditures over the life course, which can help to inform public and private insurer policies on BMI reduction and control.

Are Transplant Centers That Meet Insurer Minimum Volume Requirements Better Quality?

A pervasive viewpoint in health care is that higher patient volume leads to better outcomes, implying that facility volume can be used to identify high-quality providers. Hundreds of studies documenting a positive correlation between hospital volume and patient survival have motivated payers to use arbitrary minimum volume standards for elective surgical procedures, though it is unknown whether these policies actually improve patient outcomes. Using an instrumental variables approach, we show that minimum volume requirements in kidney transplantation do not reduce posttransplant mortality. These results suggest minimum volume requirements are not a useful proxy measure for quality and that restricting the number of hospitals from which patients can receive care could reduce access to necessary health care services.

Financial Presentation of Alzheimer Disease and Related Dementias.

Importance: Alzheimer disease and related dementias (ADRD), currently incurable neurodegenerative diseases, can threaten patients' financial status owing to memory deficits and changes in risk perception. Deteriorating financial capabilities are among the earliest signs of cognitive decline, but the frequency and extent of adverse financial events before and after diagnosis have not been characterized. Objectives: To describe the financial presentation of ADRD using administrative credit data. Design, Setting, and Participants: This retrospective secondary data analysis of consumer credit report outcomes from 1999 to 2018 linked to Medicare claims data included 81 364 Medicare beneficiaries living in single-person households. Exposures: Occurrence of adverse financial events in those with vs without ADRD diagnosis and time of adverse financial event from ADRD diagnosis. Main Outcomes and Measures: Missed payments on credit accounts (30 or more days late) and subprime credit scores. Results: Overall, 54 062 (17 890 [33.1%] men; mean [SD] age, 74 [7.3] years) were never diagnosed with ADRD during the sample period and 27 302 had ADRD for at least 1 quarter of observation (8573 [31.4%] men; mean [SD] age, 79.4 [7.5] years). Single Medicare beneficiaries diagnosed with ADRD were more likely to miss payments on credit accounts as early as 6 years prior to diagnosis compared with demographically similar beneficiaries without ADRD (7.7% vs 7.3%; absolute difference, 0.4 percentage points [pp]; 95% CI, 0.07-0.70:) and to develop subprime credit scores 2.5 years prior to diagnosis (8.5% vs 8.1%; absolute difference, 0.38 pp; 95% CI, 0.04-0.72). By the quarter after diagnosis, patients with ADRD remained more likely to miss payments than similar beneficiaries who did not develop ADRD (7.9% vs 6.9%; absolute difference, 1.0 pp; 95% CI, 0.67-1.40) and more likely to have subprime credit scores than those without ADRD (8.2% vs 7.5%; absolute difference, 0.70 pp; 95% CI, 0.34-1.1). Adverse financial events were more common among patients with ADRD in lower-education census tracts. The patterns of adverse events associated with ADRD were unique compared with other medical conditions (eg, glaucoma, hip fracture). Conclusions and Relevance: Alzheimer disease and related dementias were associated with adverse financial events years prior to clinical diagnosis that become more prevalent after diagnosis and were most common in lower-education census tracts.

Identifying Cohabiting Couples in Administrative Data: Evidence from Medicare Address Data.

Marital status is recognized as an important social determinant of health, income, and social support, but is rarely available in administrative data. We assessed the feasibility of using exact address data and zip code history to identify cohabiting couples using the 2018 Medicare Vital Status file and ZIP codes in the 2011-2014 Master Beneficiary Summary Files. Medicare beneficiaries meeting our algorithm displayed characteristics consistent with assortative mating and resembled known married couples in the Health and Retirement Study linked to Medicare claims. Address information represents a promising strategy for identifying cohabiting couples in administrative data including healthcare claims and other data types.

Does it Matter Who Decides? Outcomes of Surrogate Decision-Making for Community-Dwelling, Cognitively Impaired Older Adults Near the End of Life.

CONTEXT: Cognitively impaired older adults frequently need surrogate decision-making near the end-of-life. It is unknown whether differences in the surrogate's relationship to the decedent are associated with different end-of-life treatment choices. OBJECTIVES: To describe differences in end-of-life care for community dwelling, cognitively impaired older adults when children and spouses are involved in decision-making. METHODS: Retrospective observational study. RESULTS: Among 742 community-dwelling adults with cognitive impairment (mild cognitive impairment or dementia) prior to death, children participated in end-of-life decisions for 615 patients (83%) and spouses participated in decisions for 258 patients (35%), with both children and spouses participating for 131 patients (18%). When controlling for demographic characteristics, decedents with only a spouse decision-maker were less likely to undergo a life-sustaining treatment than decedents with only children decision-makers (P < 0.05). There was no difference in the probability of in-hospital death or burdensome transfers across facilities across decedent-decision-maker relationships. Differences in rates of life-sustaining treatment were greater when we restricted to decedents with dementia. CONCLUSION: Decedents with cognitive impairment or dementia were less likely to receive life-sustaining treatments when spouses versus children were involved with end-of-life treatment decisions but were no less likely to experience other measures of potentially burdensome end-of-life care.

The effect of tracer contact on return to care among adult, "lost to follow-up" patients living with HIV in Zambia: an instrumental variable analysis.

INTRODUCTION: Tracing patients lost to follow-up (LTFU) from HIV care is widely practiced, yet we have little knowledge of its causal effect on care engagement. In a prospective, Zambian cohort, we examined the effect of tracing on return to care within 2 years of LTFU. METHODS: We traced a stratified, random sample of LTFU patients who had received HIV care between August 2013 and July 2015. LTFU was defined as a gap of >90 days from last scheduled appointment in the routine electronic medical record. Extracting 2 years of follow-up visit data through 2017, we identified patients who returned. Using random selection for tracing as an instrumental variable (IV), we used conditional two-stage least squares regression to estimate the local average treatment effect of tracer contact on return. We examined the observational association between tracer contact and return among patient sub-groups self-confirmed as disengaged from care. RESULTS: Of the 24,164 LTFU patients enumerated, 4380 were randomly selected for tracing and 1158 were contacted by a tracer within a median of 14.8 months post-loss. IV analysis found that patients contacted by a tracer because they were randomized to tracing were no more likely to return than those not contacted (adjusted risk difference [aRD]: 3%, 95% CI: -2%, 8%, p = 0.23). Observational data showed that among contacted, disengaged patients, the rate of return was higher in the week following tracer contact (IR 5.74, 95% CI: 3.78-8.71) than in the 2 weeks to 1-month post-contact (IR 2.28, 95% CI: 1.40-3.72). There was a greater effect of tracing among patients lost for >6 months compared to those contacted within 3 months of loss. CONCLUSIONS: Overall, tracer contact did not causally increase LTFU patient return to HIV care, demonstrating the limited impact of tracing in this program, where contact occurred months after patients were LTFU. However, observational data suggest that tracing may speed return among some LTFU patients genuinely out-of-care. Further studies may improve tracing effectiveness by examining the mechanisms underlying the impact of tracing on return to care, the effect of tracing at different times-since-loss and using more accurate identification of patients who are truly disengaged to target tracing.