Cancer registry-survey data linkages to measure patient-centered quality of care: SEER-MHOS and SEER-CAHPS.

Abstract

303 Background: Limited opportunities exist to conduct population-based surveillance of cancer patient-reported outcomes. Data from the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) program has recently been linked with data from two Centers for Medicare & Medicaid Services quality improvement surveys: the Medicare Health Outcomes Survey (MHOS) and the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys. We provide an overview of the data available, recent findings, and priority areas for future research. Methods: Since 1998, the MHOS has conducted 2-wave/biennial surveys of individuals ages 65+ and individuals with disabilities enrolled in Medicare Advantage (MA) health plans on aspects of health-related quality of life, functional status, comorbidities, and symptoms. Fourteen cohorts are available, representing over 126K patients with cancer and over 1.9 million MA enrollees without a history of cancer. The SEER-MHOS publicly available data resource has produced over 40 data use agreements and 19 publications. SEER-CAHPS links cancer registry data with cross-sectional survey data of Medicare beneficiaries (both fee-for-service and MA) that contain information on patient experiences with care, including access to needed and timely care, doctor communication, health plan customer service, and care coordination. The current linkage contains survey data from 1998 to 2010 and includes over 150K and 570K respondents with and without a history of cancer, respectively. Plans to launch the publicly available resource are underway. Results: Recent findings include the impact of diagnosis and treatment on health-related quality of life in older cancer survivors, physical health impairments and variation of treatment received, the impact of cancer on activities of daily living, and variations in care ratings between participants with and without cancer across the cancer control continuum. Conclusions: The SEER-MHOS and SEER-CAHPS linked data resources provide population-based surveillance data on cancer patient-reported outcomes which allow unprecedented opportunities to evaluate national quality improvement activities.