title: Revisiting the Surveillance Epidemiology and End Results Cancer Registry and Medicare Health Outcomes Survey (SEER-MHOS) Linked Data Resource for Patient-Reported Outcomes Research in Older Adults with Cancer.
abstract: Researchers and clinicians are increasingly recognizing the value of patient-reported outcome (PRO) data to better characterize people's health and experiences with illness and care. Considering the rising prevalence of cancer in adults aged 65 and older, PRO data are particularly relevant for older adults with cancer, who often require complex cancer care and have additional comorbid conditions. A data linkage between the Surveillance Epidemiology and End Results (SEER) cancer registry and the Medicare Health Outcomes Survey (MHOS) was created through a partnership between the National Cancer Institute and the Centers for Medicare and Medicaid Services that created the opportunity to examine PROs in Medicare Advantage enrollees with and without cancer. The December 2013 linkage of SEER-MHOS data included the linked data for 12 cohorts, bringing the number of individuals in the linked data set to 95,723 with cancer and 1,510,127 without. This article reviews the features of the resource and provides information on some descriptive characteristics of the individuals in the data set (health-related quality of life, body mass index, fall risk management, number of unhealthy days in the past month). Individuals without (n=258,108) and with (n=3,440) cancer (1,311 men with prostate cancer, 982 women with breast cancer, 689 with colorectal cancer, 458 with lung cancer) were included in the current descriptive analysis. Given increasing longevity, advances in effective therapies and earlier detection, and population growth, the number of individuals aged 65 and older with cancer is expected to reach more than 12 million by 2020. SEER-MHOS provides population-level, self-reported, cancer registry-linked data for person-centered surveillance research on this growing population.
authors.affiliation: Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, Maryland.
authors.forename: Erin E
authors.initials: EE
authors.lastname: Kent
authors.affiliation: Health Services Advisory Group, Medicare Health Outcomes Study, Phoenix, Arizona.
authors.forename: Rochelle
authors.initials: R
authors.lastname: Malinoff
authors.affiliation: School of Public Health, Drexel University, Philadelphia, Pennsylvania.
authors.forename: Heather M
authors.initials: HM
authors.lastname: Rozjabek
authors.affiliation: Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, Maryland.
authors.forename: Anita
authors.initials: A
authors.lastname: Ambs
authors.affiliation: Patient-Centered Outcomes Research Institute, Washington, District of Columbia.
authors.forename: Steven B
authors.initials: SB
authors.lastname: Clauser
authors.affiliation: Information Management Services, Inc., Rockville, Maryland.
authors.forename: Marie A
authors.initials: MA
authors.lastname: Topor
authors.affiliation: Information Management Services, Inc., Rockville, Maryland.
authors.forename: Gigi
authors.initials: G
authors.lastname: Yuan
authors.affiliation: Health Services Advisory Group, Medicare Health Outcomes Study, Phoenix, Arizona.
authors.forename: James
authors.initials: J
authors.lastname: Burroughs
authors.affiliation: Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, Maryland.
authors.forename: Anne B
authors.initials: AB
authors.lastname: Rodgers
authors.affiliation: Centers for Medicare & Medicaid Services, Baltimore, Maryland.
authors.forename: Kimberly
authors.initials: K
authors.lastname: DeMichele
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D015897:Comorbidity; D005260:Female; D015276:Health Care Rationing / Q000379:methods / Q000706:statistics & numerical data; D006299:Health Services for the Aged / Q000706:statistics & numerical data*; D054624:Health Status Disparities; D006801:Humans; D008297:Male; D008498:Medical Record Linkage / Q000379:methods*; D006278:Medicare / Q000706:statistics & numerical data*; D009369:Neoplasms / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology / Q000628:therapy; D063868:Patient Outcome Assessment; D015995:Prevalence; D058996:Quality Improvement; D011788:Quality of Life; D018426:SEER Program; D014481:United States / Q000453:epidemiology
keywords: Medicare advantage; cancer; health-related quality of life; patient-reported outcomes; surveillance