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

Spatial Heterogeneity in Cancer Control Planning and Cancer Screening Behavior

Each state is autonomous in its comprehensive cancer control (CCC) program, and considerable heterogeneity exists in the program plans. However, researchers often focus on the concept of nationally representative data and pool observations across states using regression analysis to come up with average effects when interpreting results. Due to considerable state autonomy and heterogeneity in various dimensions—including culture, politics, historical precedent, regulatory environment, and CCC efforts—it is important to examine states separately and to use geographic analysis to translate findings in place and time

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

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

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