Do Contemporary Cancer Survivors Experience Better Quality of Life? Evaluating a Decade of SEER Medicare Health Outcomes Survey Data.

BACKGROUND: A cancer diagnosis may have deleterious effects on health-related quality of life (HRQOL) as adults age. This study examined differences in HRQOL between cancer and matched noncancer Medicare beneficiaries over 65, within and across two time periods. METHODS: We used novel matching methods on data from the Surveillance, Epidemiology and End Results (SEER)-Medicare Health Outcomes Survey (MHOS) data resource. We matched SEER-MHOS respondents with cancer from a recent period (2015-2019) to respondents with cancer from an earlier period (2008-2012). We then matched these two cohorts, without replacement, to contemporary cohorts without cancer diagnoses. We estimated Veteran's RAND 12-Item Short Form Survey Physical Component Summary (PCS) and Mental Component Summary (MCS) scores for all cohorts. RESULTS: Our analysis found significantly higher mean MCS scores in the recent period for those with cancer relative to the recent noncancer control group. Breast and lung cancer presented positive and statistically significant trends. We found statistically insignificant differences in PCS scores between the two time periods. No cancer sites had different PCS scores over time compared with the comparison group. CONCLUSIONS: Mental health for those with cancer improved more between 2008 and 2019 than a matched noncancer comparison group. Physical health remained stable across time. These findings highlight the importance of including a matched noncancer group when evaluating HRQOL outcomes. IMPACT: SEER-MHOS respondents with cancer report stable PCS scores across 15 years of data and higher MCS scores relative to noncancer controls.

Development and validation of a community-level social determinants of health index for drug overdose deaths in the HEALing Communities Study.

INTRODUCTION: Social determinants of health (SDoH), such as socioeconomic status, education level, and food insecurity, are believed to influence the opioid crisis. While global SDoH indices such as the CDC's Social Vulnerability Index (SVI) and Area Deprivation Index (ADI) combine the explanatory power of multiple social factors for understanding health outcomes, they may be less applicable to the specific challenges of opioid misuse and associated outcomes. This study develops a novel index tailored to opioid misuse outcomes, tests the efficacy of this index in predicting drug overdose deaths across contexts, and compares the explanatory power of this index to other SDoH indices. METHODS: Focusing on four HEALing Communities Study (HCS) states (Kentucky, Massachusetts, New York and Ohio; encompassing 4269 ZIP codes), we identified multilevel SDoH potentially associated with opioid misuse and aggregated publicly available data for each measure. We then leveraged a random forest model to develop a composite measure that predicts age-adjusted drug overdose mortality rates based on SDoH. We used this composite measure to understand HCS and non-HCS communities in terms of overdose risk across areas of varying racial composition. Finally, we compared variance in drug overdose deaths explained by this index to variance explained by the SVI and ADI. RESULTS: Our composite measure included 28 SDoH measures and explained approximately 89 % percent of variance in age-adjusted drug overdose mortality across HCS states. Health care measures, including emergency department visits and primary care provider availability, were top predictors within the index. Index accuracy was robust within and outside of HCS communities and states. This measure identified high levels of overdose mortality risk in segregated communities. CONCLUSIONS: Existing SDoH indices fail to explain much variation in area-level overdose mortality rates. Having tailored composite indices can help us to identify places in which residents are at highest risk based on their composite contexts. A comprehensive index can also help to develop effective community interventions for programs such as HCS by considering the context in which people live.

Community-level determinants of stakeholder perceptions of community stigma toward people with opioid use disorders, harm reduction services and treatment in the HEALing Communities Study.

BACKGROUND: Community stigma toward people with opioid use disorder (OUD) can impede access to harm reduction services and treatment with medications for opioid use disorder (MOUD). Such community OUD stigma is partially rooted in community-level social and economic conditions, yet there remains a paucity of large-scale quantitative data examining community-level factors associated with OUD stigma. We examined whether rurality, social inequity, and racialized segregation across communities from four states in the HEALing Communities Study (HCS) were associated with 1) greater perceived community stigma toward people treated for OUD, 2) greater perceived intervention stigma toward MOUD, and 3) greater perceived intervention stigma toward naloxone by community stakeholders in the HCS. METHODS: From November 2019-January 2020, a cross-sectional survey about community OUD stigma was administered to 801 members of opioid overdose prevention coalitions across 66 communities in four states prior to the start of HCS intervention activities. Bivariate analyses assessed pairwise associations between community rural/urban status and each of the three stigma variables, using linear mixed effect modeling to account for response clustering within communities, state, and respondent sociodemographic characteristics. We conducted similar bivariate analyses to assess pairwise associations between racialized segregation and social inequity. RESULTS: On average, the perceived community OUD stigma scale score of stakeholders from rural communities was 4% higher (ß=1.57, SE=0.7, p≤0.05), stigma toward MOUD was 6% higher (ß=0.28, SE=0.1, p≤0.05), and stigma toward naloxone was 10% higher (ß=0.46, SE=0.1, p≤0.01) than among stakeholders from urban communities. No significant differences in the three stigma variables were found among communities based on racialized segregation or social inequity. CONCLUSION: Perceived community stigma toward people treated for OUD, MOUD, and naloxone was higher among stakeholders in rural communities than in urban communities. Findings suggest that interventions and policies to reduce community-level stigma, particularly in rural areas, are warranted.

Composite Indices of Social Determinants of Health: Overview, Measurement Gaps, and Research Priorities for Health Equity.

The goal of health equity is for all people to have opportunities and resources for optimal health outcomes regardless of their social identities, residence in marginalized communities, and/or experience with oppressive systems. Social determinants of health (SDOH)-the conditions in which we are born, grow, live, work, and age-are inextricably tied to health equity. Advancing health equity thus requires reliable measures of SDOH. In the United States, comprehensive individual-level data on SDOH are difficult to collect, may be inaccurate, and do not capture all dimensions of inequitable outcomes. Individual area-based indicators are widely available, but difficult to use in practice. Numerous area-level composite indices are available to describe SDOH, but there is no consensus on which indices are most appropriate to use. This article presents an analytic taxonomy of currently available SDOH composite indices and compares their components and predictive ability, providing insights into gaps and areas for further research.

Associations between healthcare costs and care experiences among older adults with and without cancer.

INTRODUCTION: Care coordination and patient-provider communication are important for older adults with cancer, as they likely have additional, non-cancer chronic conditions requiring consultation across multiple providers. Suboptimal care coordination and patient-provider communication can lead to costly and preventable adverse outcomes. This study examines Medicare expenditures associated with patient-reported care coordination and patient-provider communication among older adults with and without cancer. MATERIALS AND METHODS: We explore SEER-CAHPS® (Surveillance, Epidemiology and End Results-Consumer Assessment of Healthcare Providers and Systems) linked data for differences in health care expenditures by care coordination and patient-provider communication experiences for beneficiaries with and without cancer. The cancer cohort included beneficiaries with ten prevalent cancer types diagnosed 2011-2019 at least six months before completing a CAHPS survey. Medicare expenditures were abstracted from Medicare claims data. Care coordination and patient-provider communication composite scores (range 0-100, higher scores indicate better experiences) were patient-reported in the CAHPS® survey. We estimated expenditure differences per one-point change in composite scores for patients with and without cancer. RESULTS: Our analysis included 16,778 matched beneficiaries with and without a previously diagnosed cancer (N = 33,556). Higher care coordination and patient-provider communication scores were inversely associated with Medicare expenditures among beneficiaries with and without cancer in the six months prior to survey response, ranging from -$83 (standard error [SE] = $7) to -$90 (SE = $6) per month. Six months post-survey, expenditures estimates ranging -$88 (SE = $6) to -$106 (SE = $8) were found. DISCUSSION: We found that lower Medicare expenditures were associated with higher care coordination and patient-provider communication scores. As the number of survivors living longer both with and beyond their cancer grows, addressing their multifaceted care and improving outcomes will be critical.

Associations between mental health and care experiences among older adults with cancer.

OBJECTIVE: We sought to understand whether people with cancer who received mental health services reported different care experiences than those who did not. METHODS: We used Surveillance, Epidemiology, and End Results (SEER)-Consumer Assessment of Health Providers and Systems (CAHPS) linked data to identify Medicare beneficiaries aged 66 and over diagnosed with solid tumor malignancies between 8/2006 and 12/2013. We identified mental health services using claims spanning 12 months before cancer diagnosis through up to 5 years afterward. Outcomes were care experience ratings (e.g., Overall Care) and composite measures (e.g., Doctor Communication). We estimated frequentist and Bayesian regression models adjusted for standard confounders, including sociodemographics, general and mental health status (MHS), and other characteristics. Models included interaction terms to understand whether mental healthcare changes self-reported experiences for individuals with adverse MHS. RESULTS: Approximately 22% (n = 4998 individuals with cancer) had a mental health disorder claim; 17% of these reported fair/poor MHS versus only 7% of those in the cancer-only cohort (without a mental health disorder claim). Before adjusting for mental healthcare utilization and case-mix, worse MHS was associated with worse care experiences (p < 0.001 for all six measures). After accounting for mental health disorder-related healthcare utilization and case mix, multivariable regression models showed no associations between MHS and worse care experiences. CONCLUSIONS: Care for mental health disorders mediates the association between MHS and perceived care experiences. The results suggest that mental health treatment may improve the self-reported experiences of care for older adults with cancer and adverse mental health issues.

Associations between illness burden and care experiences among Medicare beneficiaries before or after a cancer diagnosis.

INTRODUCTION: To understand associations between a new measure of illness burden and care experiences in a large, national sample of Medicare beneficiaries surveyed before or after a cancer diagnosis. MATERIALS AND METHODS: The SEER-CAHPS Illness Burden Index (SCIBI) was previously developed using Surveillance, Epidemiology, and End Results (SEER)-Consumer Assessment of Healthcare Providers and Systems (CAHPS) linked data. The SCIBI provides a standardized morbidity score based on self- and other-reported information from 8 domains and proxies relative risk of 12-month, all-cause mortality among people surveyed before or after a cancer diagnosis. We analyzed a population of Medicare beneficiaries (n = 116,735; 49% fee-for-service and 51% Medicare Advantage [MA]; 73% post-cancer diagnosis) surveyed 2007-2013 to understand how their SCIBI scores were associated with 12 different care experience measures. Frequentist and Bayesian multivariable regression models adjusted for standard case-mix adjustors, enrollment type, timing of cancer diagnoses relative to survey, and survey year. RESULTS AND DISCUSSION: SCIBl scores were associated (P < .001) in frequentist models with better ratings of Health Plan (coefficient ± standard error: 0.33 ± 0.08) and better Getting Care Quickly scores (0.51 ± 0.09). In Bayesian models, individuals with higher illness burden had similar results on the same two measures and also reported reliably worse Overall Care experiences (coefficient ± posterior SD: -0.17 ± 0.06). Illness burden may influence how people experience care or report those experiences. Individuals with greater illness burdens may need intensive care coordination and multilevel interventions before and after a cancer diagnosis.

Are care experiences associated with survival among cancer patients? An analysis of the SEER-CAHPS data resource.

PURPOSE: Cancer patients' care experiences encompass the range of interactions with the health care system and are an important indicator of care quality, which may influence survival outcomes. This study evaluates relationships between care experiences and survival using a large, nationally representative sample of cancer patients. METHODS: We used linked SEER (Surveillance Epidemiology and End Results)-CAHPS (Consumer Assessment of Healthcare Providers and Systems) data to identify people diagnosed 8/2006-12/2013, focusing on 10 solid tumor cancer sites with the highest mortality rates among those > 65. CAHPS measures included 5 global ratings and 3 composite scores. We used survey-weighted Cox proportional hazard models comparing survival time for those who had lower (0-8) vs higher ratings (9-10) and lower (0-89) vs higher (90-100) composite scores, adjusting for case-mix and additional covariates. RESULTS: We identified 2,263 eligible people; 26% died by 5-year post-survey completion or end of follow-up (12/31/2017). We found lower Prescription Drug Plan (PDP) ratings were significantly associated with lower mortality (adjusted HR = 0.67, p = 0.03). Lower Getting Needed Care scores were also significantly associated with lower mortality (adjusted HR = 0.79, p = 0.04). For other care experience measures, general health status, cancer stage, and comorbidities were more predictive of survival (p < .05). CONCLUSIONS: Except for PDP and Getting Needed Care, survival was similar for those with worse versus better care experiences. Patients with poorer cancer prognoses may perceive better services from their drug plan and more responsive care from clinical providers compared to those with better prognoses. Further research is needed examining processes underlying perceptions of care experiences and survival.

Associations between shared care and patient experiences among older cancer survivors.

PURPOSE: Cancer survivors have unique medical care needs. "Shared care," delivered by both oncologists and primary care providers (PCPs), may better address these needs. Little information is available on differences in outcomes among survivors receiving shared care versus oncologist-led or PCP-led care. This study compared experiences of care for survivors receiving shared care, oncologist-led, PCP-led, or other care patterns. METHODS: We used SEER-CAHPS data, including NCI's SEER registry data, Medicare claims, and Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey responses. Medicare Fee-for-Service beneficiaries age ≥ 65 years in SEER-CAHPS with breast, cervical, colorectal, lung, renal, or prostate cancers or hematologic malignancies who responded to a Medicare CAHPS survey ≥ 18 months post-diagnosis were included. CAHPS measures included ratings of overall care, personal doctor, specialist physician, health plan, prescription drug plan, and five composite scores. Survivorship care patterns were identified using proportions of oncologist, PCP, and other physician encounters. Multivariable regressions examined associations between care patterns and CAHPS outcomes. RESULTS: Among 10,132 survivors, 15% received shared care, 10% oncologist-led, 33% PCP-led, and 42% other. Compared with shared care, we found no significant differences in experiences of care except for getting needed drugs (lower scores for PCP-led and other care patterns). Sensitivity analyses using different patterns of care definitions similarly showed no associations between survivorship care pattern and experience of care. CONCLUSIONS: Within the limitations of the study dataset, survivors age 65+ receiving shared care reported similar experiences of care to those receiving oncologist-led, PCP-led, and other patterns of care. IMPLICATIONS FOR CANCER SURVIVORS: Shared care may not provide survivor-perceived benefits compared with other care patterns.

Games People Play: Lessons on Performance Measure Gaming from New Zealand Comment on "Gaming New Zealand's Emergency Department Target: How and Why Did It Vary Over Time and Between Organisations?"

For decades, observers have noted that gaming of performance measurement appears to be both endemic and endlessly creative. A recent study by Tenbensel and colleagues provides a detailed look at gaming of a health system performance measure-emergency department (ED) wait times-within four hospitals in New Zealand. Combined, these four hospitals handled more than 25% of the ED visits in the country each year. Tenbensel and colleagues examine whether the New Zealand ED wait time target was set appropriately and whether we can trust any performance measure statistics that are not independently verified or audited. Their thoughtprovoking examination is relevant to anyone working in quality improvement and provides a valuable set of tools for detecting gaming in performance measurement.

Random survival forests using linked data to measure illness burden among individuals before or after a cancer diagnosis: Development and internal validation of the SEER-CAHPS illness burden index.

PURPOSE: To develop and internally validate an illness burden index among Medicare beneficiaries before or after a cancer diagnosis. METHODS: Data source: SEER-CAHPS, linking Surveillance, Epidemiology, and End Results (SEER) cancer registry, Medicare enrollment and claims, and Medicare Consumer Assessment of Healthcare Providers and Systems (Medicare CAHPS) survey data providing self-reported sociodemographic, health, and functional status information. To generate a score for everyone in the dataset, we tabulated 4 groups within each annual subsample (2007-2013): 1) Medicare Advantage (MA) beneficiaries or 2) Medicare fee-for-service (FFS) beneficiaries, surveyed before cancer diagnosis; 3) MA beneficiaries or 4) Medicare FFS beneficiaries surveyed after diagnosis. Random survival forests (RSFs) predicted 12-month all-cause mortality and drew predictor variables (mean per subsample = 44) from 8 domains: sociodemographic, cancer-specific, health status, chronic conditions, healthcare utilization, activity limitations, proxy, and location-based factors. Roughly two-thirds of the sample was held out for algorithm training. Error rates based on the validation ("out-of-bag," OOB) samples reflected the correctly classified percentage. Illness burden scores represented predicted cumulative mortality hazard. RESULTS: The sample included 116,735 Medicare beneficiaries with cancer, of whom 73 % were surveyed after their cancer diagnosis; overall mean mortality rate in the 12 months after survey response was 6%. SEER-CAHPS Illness Burden Index (SCIBI) scores were positively skewed (median range: 0.29 [MA, pre-diagnosis] to 2.85 [FFS, post-diagnosis]; mean range: 2.08 [MA, pre-diagnosis] to 4.88 [MA, post-diagnosis]). The highest decile of the distribution had a 51 % mortality rate (range: 29-71 %); the bottom decile had a 1% mortality rate (range: 0-2 %). The error rate was 20 % overall (range: 9% [among FFS enrollees surveyed after diagnosis] to 36 % [MA enrollees surveyed before diagnosis]). CONCLUSIONS: This new morbidity measure for Medicare beneficiaries with cancer may be useful to future SEER-CAHPS users who wish to adjust for comorbidity.

Risk adjustment in Home Health Care CAHPS.

The authors disagree with previous research concluding that the Home Health Care Consumer Assessment of Healthcare Providers and Services (CAHPS) publicly reported data are insufficiently adjusted for patient comorbidities.

Care experiences among dually enrolled older adults with cancer: SEER-CAHPS, 2005-2013.

PURPOSE: Given the associations between poverty and poorer outcomes among older adults with cancer, we sought to understand the effects of dual enrollment in Medicare and Medicaid-as a marker of poverty-on self-reported care experiences among seniors diagnosed with cancer. METHODS: Retrospective, observational study using cancer registry, Medicare claims, and care experience survey data (Surveillance, Epidemiology, and End Results [SEER]-Consumer Assessment of Healthcare Providers and Systems [CAHPS®]) for a national sample of fee-for-service (FFS) and Medicare Advantage (MA) enrollees aged 65 or older. We included people with one incident primary, malignant cancer diagnosed between 2005 and 2011, surveyed within 2 years after diagnosis (n = 9,800; 995 dual enrollees). Medicare CAHPS measures included 5 global ratings and 3 composite scores. RESULTS: After adjustment for potential confounders, people with cancer histories who were dually enrolled were significantly more likely to report better experiences than non-duals on 2 measures (Medicare/their health plan: adjusted odds ratio [aOR]: 0.68, 95% confidence interval [CI] 0.53-0.87; prescription drug plan [PDP]: aOR: 0.54, 95% CI 0.40-0.73). CONCLUSIONS: Dual enrollees with cancer reported better experiences than Medicare-only enrollees in terms of their health plan (Medicare FFS or Medicare Advantage) and their PDP. Better ratings among dually enrolled beneficiaries suggest possible divergence between health outcomes and care experiences, warranting additional investigation.

Emergency Department and Primary Care Use in Massachusetts 5 Years After Health Reform.

OBJECTIVE: Conceptually, access to primary care (through insurance) should reduce emergency department (ED) visits for primary care sensitive (PCS) conditions. We sought to identify characteristics of insured Massachusetts residents associated with PCS ED use, and compare such use for public versus private insurees. POPULATION AND SETTING: People under age 65 in the Massachusetts All-Payer Claims Data, 2011-2012. STUDY DESIGN: Retrospective, observational analysis of PCS ED use with nonurgent, urgent/primary care treatable, and urgent/potentially avoidable visits being considered PCS. We predicted utilization in 2012 using multivariable regression models and data available in 2011 administrative records. PRINCIPAL FINDINGS: Among 2,269,475 nonelderly Massachusetts residents, 40% had public insurance. Among public insurees, PCS ED use was higher than for private (mean, 36.5 vs. 9.0 per 100 persons; adjusted risk ratio, 2.53; 95% confidence limits, 2.49-2.56), while having any primary care visit was less common (70% vs. 83%), as was having any visit to one's own (attributed) primary care provider (38% vs. 44%). CONCLUSIONS: Public insurance was associated with less access to primary care and more PCS ED use; statewide labor shortages and low reimbursement rates from public insurance may have provided inadequate access to care that might otherwise have helped reduce PCS ED use.

Qualitative analysis and conceptual mapping of patient experiences in home health care.

This study explored patient experiences in home health care through a literature review, focus groups, and interviews. Our goal was to develop a conceptual map of home health care patient experience domains. The conceptual map identifies technical and personal spheres of care, relating prior studies to new focus group and interview findings and identifying the most important domains of care. Study participants (n = 35) most frequently reported the most important domain as staff who are caring, supportive, patient, empathetic, respectful, and considerate (endorsed by 29% of participants). The conceptual map includes 114 discrete domains.

Healthcare experience among older cancer survivors: Analysis of the SEER-CAHPS dataset.

OBJECTIVE: Little is known about factors affecting medical care experiences of cancer survivors. This study examined experience of care among cancer survivors and assessed associations of survivors' characteristics with their experience. MATERIALS AND METHODS: We used a newly-developed, unique data resource, SEER-CAHPS (NCI's Surveillance Epidemiology and End Results [SEER] data linked to Medicare Consumer Assessment of Healthcare Providers and Systems [CAHPS] survey responses), to examine experiences of care among breast, colorectal, lung, and prostate cancer survivors age >66years who completed CAHPS >1year after cancer diagnosis and survived ≥1year after survey completion. Experience of care was assessed by survivor-provided scores for overall care, health plan, physicians, customer service, doctor communication, and aspects of care. Multivariable logistic regression models assessed associations of survivors' sociodemographic and clinical characteristics with care experience. RESULTS: Among 19,455 cancer survivors with SEER-CAHPS data, higher self-reported general-health status was significantly associated with better care experiences for breast, colorectal, and prostate cancer survivors. In contrast, better mental-health status was associated with better care experience for lung cancer survivors. College-educated and Asian survivors were less likely to indicate high scores for care experiences. Few differences in survivors' experiences were observed by sex or years since diagnosis. CONCLUSIONS: The SEER-CAHPS data resources allows assessment of factors influencing experience of cancer among U.S. cancer survivors. Higher self-reported health status was associated with better experiences of care; other survivors' characteristics also predicted care experience. Interventions to improve cancer survivors' health status, such as increased access to supportive care services, may improve experience of care.

Enhancing Administrative Data to Predict Emergency Department Utilization: The Role of Neighborhood Sociodemographics.

Much of emergency department use is avoidable, and high-quality primary care can reduce it, but performance measures related to ED use may be inadequately risk-adjusted. To explore associations between emergency department (ED) use and neighborhood poverty, we conducted a secondary analysis of Massachusetts managed care network data, 2009-2011. For enrollees with commercial insurance (n = 64,623), we predicted any, total, and total primary-care-sensitive (PCS) ED visits using claims/enrollment (age, sex, race, morbidity, prior ED use), network (payor, primary care provider [PCP] type and quality), and census-tract-level characteristics. Overall, 14.6% had any visit; mean visits per 100 persons were 18.8 (±0.2) total and 7.6 (±0.1) PCS. Neighborhood poverty predicted all three outcomes (all P< .001). Holding providers accountable for their patients' ED use should avoid penalizing PCPs who care for poor and otherwise vulnerable populations. Expected use targets should account for neighborhood-level variables such as income, as well as other risk factors.