Patient experiences of cancer care: scoping review, future directions, and introduction of a new data resource: Surveillance Epidemiology and End Results-Consumer Assessment of Healthcare Providers and Systems (SEER-CAHPS)

The shift towards providing high value cancer care has placed increasing importance on patient experiences. This scoping review summarizes patient experience literature, highlights research gaps, and provides future research directions. We then introduce a new resource that links the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) program with the Centers for Medicare and Medicaid Services Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey and longitudinal medical claims data. We conducted a scoping review to identify relevant research within the Medicare CAHPS domain that examine factors associated with patient-reported experiences with their cancer care. Gaps indicate a need for population-based research to explore relationships between cancer patient experiences, healthcare utilization, and subsequent patient outcomes. SEER-CAHPS, a publicly accessible data resource, may assist in addressing these gaps by linking cancer registry (SEER), survey data reported by Medicare beneficiaries (CAHPS), and Medicare claims, providing unique insight into quality of care. Linked data include 231,089 surveys from patients with a cancer diagnosis, and 4,236,529 surveys from patients without a cancer diagnosis. Results indicate substantial gaps in our knowledge of patient experiences and the need for additional resources. SEER-CAHPS links direct patient feedback with cancer registry and Medicare claims, making it an important source of information on experiences and healthcare utilization. Increasing recognition of the importance of patient-centeredness points to the need for population-based studies. Findings from SEER-CAHPS will inform initiatives to improve care delivery

Breast-Cancer-Specific Mortality in Patients Treated Based on the 21-Gene Assay: A SEER Population-Based Study

The 21-gene Recurrence Score assay is validated to predict recurrence risk and chemotherapy benefit in hormone-receptor-positive (HR+) invasive breast cancer. To determine prospective breast-cancer-specific mortality (BCSM) outcomes by baseline Recurrence Score results and clinical covariates, the National Cancer Institute collaborated with Genomic Health and 14 population-based registries in the the Surveillance, Epidemiology, and End Results (SEER) Program to electronically supplement cancer surveillance data with Recurrence Score results. The prespecified primary analysis cohort was 40–84 years of age, and had node-negative, HR+, HER2-negative, nonmetastatic disease diagnosed between January 2004 and December 2011 in the entire SEER population, and Recurrence Score results (N = 38,568). Unadjusted 5-year BCSM were 0.4% (n = 21,023; 95% confidence interval (CI), 0.3–0.6%), 1.4% (n = 14,494; 95% CI, 1.1–1.7%), and 4.4% (n = 3,051; 95% CI, 3.4–5.6%) for Recurrence Score \u3c 18, 18–30, and ≥ 31 groups, respectively (P \u3c 0.001). In multivariable analysis adjusted for age, tumor size, grade, and race, the Recurrence Score result predicted BCSM (P \u3c 0.001). Among patients with node-positive disease (micrometastases and up to three positive nodes; N = 4,691), 5-year BCSM (unadjusted) was 1.0% (n = 2,694; 95% CI, 0.5–2.0%), 2.3% (n = 1,669; 95% CI, 1.3–4.1%), and 14.3% (n = 328; 95% CI, 8.4–23.8%) for Recurrence Score \u3c 18, 18–30, ≥ 31 groups, respectively (P \u3c 0.001). Five-year BCSM by Recurrence Score group are reported for important patient subgroups, including age, race, tumor size, grade, and socioeconomic status. This SEER study represents the largest report of prospective BCSM outcomes based on Recurrence Score results for patients with HR+, HER2-negative, node-negative, or node-positive breast cancer, including subgroups often under-represented in clinical trials

Unveiling SEER-CAHPS®: A New Data Resource for Quality of Care Research

BACKGROUND: Since 1990, the National Cancer Institute (NCI) and Centers for Medicare and Medicaid Services (CMS) have collaborated to create linked data resources to improve our understanding of patterns of care, health care costs, and trends in utilization. However, existing data linkages have not included measures of patient experiences with care. OBJECTIVE: To describe a new resource for quality of care research based on a linkage between the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient surveys and the NCI’s Surveillance, Epidemiology and End Results (SEER) data. DESIGN: This is an observational study of CAHPS respondents and includes both fee-for-service and Medicare Advantage beneficiaries with and without cancer. The data linkage includes: CAHPS survey data collected between 1998 and 2010 to assess patient reports on multiple aspects of their care, such as access to needed and timely care, doctor communication, as well as patients’ global ratings of their personal doctor, specialists, overall health care, and their health plan; SEER registry data (1973–2007) on cancer site, stage, treatment, death information, and patient demographics; and longitudinal Medicare claims data (2002–2011) for fee-for-service beneficiaries on utilization and costs of care. PARTICIPANTS: In total, 150,750 respondents were in the cancer cohort and 571,318 were in the non-cancer cohort. MAIN MEASURES: The data linkage includes SEER data on cancer site, stage, treatment, death information, and patient demographics, in addition to longitudinal data from Medicare claims and information on patient experiences from CAHPS surveys. KEY RESULTS: Sizable proportions of cases from common cancers (e.g., breast, colorectal, prostate) and short-term survival cancers (e.g., pancreas) by time since diagnosis enable comparisons across the cancer care trajectory by MA vs. FFS coverage. CONCLUSIONS: SEER-CAHPS is a valuable resource for information about Medicare beneficiaries’ experiences of care across different diagnoses and treatment modalities, and enables comparisons by type of insurance

Astrophysics with the Laser Interferometer Space Antenna

Laser Interferometer Space Antenna (LISA) will be a transformative experiment for gravitational wave astronomy as it will offer unique opportunities to address many key astrophysical questions in a completely novel way. The synergy with ground-based and other space-based instruments in the electromagnetic domain, by enabling multi-messenger observations, will add further to the discovery potential of LISA. The next decade is crucial to prepare the astrophysical community for LISA's first observations. This review outlines the extensive landscape of astrophysical theory, numerical simulations, and astronomical observations that are instrumental for modeling and interpreting the upcoming LISA datastream. To this aim, the current knowledge in three main source classes for LISA is reviewed: ultra-compact stellar-mass binaries, massive black hole binaries, and extreme or intermediate mass ratio inspirals. The relevant astrophysical processes and the established modeling techniques are summarized. Likewise, open issues and gaps in our understanding of these sources are highlighted, along with an indication of how LISA could help make progress in the different areas. New research avenues that LISA itself, or its joint exploitation with studies in the electromagnetic domain, will enable, are also illustrated. Improvements in modeling and analysis approaches, such as the combination of numerical simulations and modern data science techniques, are discussed. This review is intended to be a starting point for using LISA as a new discovery tool for understanding our Universe

Examining colorectal cancer survivors' surveillance patterns and experiences of care: a SEER-CAHPS study.

PurposeWe examined associations between experiences of care and adherence to surveillance guidelines among Medicare Fee-For-Service beneficiaries with colorectal cancer (CRC).MethodsUsing linked data from the National Cancer Institute's Surveillance, Epidemiology, and End results (SEER) cancer registry program and the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient experience surveys (SEER-CAHPS), we identified local/regional CRC survivors diagnosed in 1999-2009 aged 65+, who underwent surgical resection and completed a CAHPS survey <36 months of diagnosis. Adherence for a 3-year observation period was defined as receiving a colonoscopy; ≥2 carcinoembryonic antigen (CEA) tests; and each year had ≥2 office visits and ≥1 computerized tomography test.ResultsMany of the 314 participants reported ratings of a 9 or 10 out of 10 for overall care (55.4%), personal doctor (58.6%), health plan (59.6%), and specialist doctor (47.0%). Adherence to post-resection surveillance was 76.1% for office visits, 36.9% for CEA testing, 48.1% for colonoscopy, and 10.3% for CT Imaging. Overall, 37.9% of the sample were categorized as non-adherent (adhering to ≤1 surveillance guideline). In multivariable models, ratings of personal doctor and specialist doctor were positively associated with adherence to office visits, and ratings of personal doctor were associated with adherence overall.ConclusionsFindings point to the potentially important role of patient-provider relationships in adherence to office visits for CRC surveillance. As adherence may increase survival among CRC survivors, further investigation is needed to identify specific components of this relationship that impact office visit adherence, and other potentially modifiable drivers of surveillance guidelines

Examining colorectal cancer survivors' surveillance patterns and experiences of care: a SEER-CAHPS study.

PurposeWe examined associations between experiences of care and adherence to surveillance guidelines among Medicare Fee-For-Service beneficiaries with colorectal cancer (CRC).MethodsUsing linked data from the National Cancer Institute's Surveillance, Epidemiology, and End results (SEER) cancer registry program and the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient experience surveys (SEER-CAHPS), we identified local/regional CRC survivors diagnosed in 1999-2009 aged 65+, who underwent surgical resection and completed a CAHPS survey <36 months of diagnosis. Adherence for a 3-year observation period was defined as receiving a colonoscopy; ≥2 carcinoembryonic antigen (CEA) tests; and each year had ≥2 office visits and ≥1 computerized tomography test.ResultsMany of the 314 participants reported ratings of a 9 or 10 out of 10 for overall care (55.4%), personal doctor (58.6%), health plan (59.6%), and specialist doctor (47.0%). Adherence to post-resection surveillance was 76.1% for office visits, 36.9% for CEA testing, 48.1% for colonoscopy, and 10.3% for CT Imaging. Overall, 37.9% of the sample were categorized as non-adherent (adhering to ≤1 surveillance guideline). In multivariable models, ratings of personal doctor and specialist doctor were positively associated with adherence to office visits, and ratings of personal doctor were associated with adherence overall.ConclusionsFindings point to the potentially important role of patient-provider relationships in adherence to office visits for CRC surveillance. As adherence may increase survival among CRC survivors, further investigation is needed to identify specific components of this relationship that impact office visit adherence, and other potentially modifiable drivers of surveillance guidelines

Unveiling SEER-CAHPS®: a new data resource for quality of care research.

BackgroundSince 1990, the National Cancer Institute (NCI) and Centers for Medicare and Medicaid Services (CMS) have collaborated to create linked data resources to improve our understanding of patterns of care, health care costs, and trends in utilization. However, existing data linkages have not included measures of patient experiences with care.ObjectiveTo describe a new resource for quality of care research based on a linkage between the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient surveys and the NCI's Surveillance, Epidemiology and End Results (SEER) data.DesignThis is an observational study of CAHPS respondents and includes both fee-for-service and Medicare Advantage beneficiaries with and without cancer. The data linkage includes: CAHPS survey data collected between 1998 and 2010 to assess patient reports on multiple aspects of their care, such as access to needed and timely care, doctor communication, as well as patients' global ratings of their personal doctor, specialists, overall health care, and their health plan; SEER registry data (1973-2007) on cancer site, stage, treatment, death information, and patient demographics; and longitudinal Medicare claims data (2002-2011) for fee-for-service beneficiaries on utilization and costs of care.ParticipantsIn total, 150,750 respondents were in the cancer cohort and 571,318 were in the non-cancer cohort.Main measuresThe data linkage includes SEER data on cancer site, stage, treatment, death information, and patient demographics, in addition to longitudinal data from Medicare claims and information on patient experiences from CAHPS surveys.Key resultsSizable proportions of cases from common cancers (e.g., breast, colorectal, prostate) and short-term survival cancers (e.g., pancreas) by time since diagnosis enable comparisons across the cancer care trajectory by MA vs. FFS coverage.ConclusionsSEER-CAHPS is a valuable resource for information about Medicare beneficiaries' experiences of care across different diagnoses and treatment modalities, and enables comparisons by type of insurance