Surveys and Data Sets

To collect quality data and publish important findings, CDC has supported the development of cancer survivorship questions on several national surveillance surveys, including—

• Behavioral Risk Factor Surveillance System
  For an explanation of how this is used to collect information about cancer survivors, see Surveillance of Demographic Characteristics and Health Behaviors Among Adult Cancer Survivors—Behavioral Risk Factor Surveillance System, United States, 2009.
• Medical Expenditures Panel Survey Your Experiences with Cancer Questionnaire
• National Health Interview Survey

Behavioral Risk Factor Surveillance System (BRFSS)

The Behavioral Risk Factor Surveillance System (BRFSS) provides state-specific benchmarks for cancer prevention (tobacco use, nutrition, physical activity, and obesity) and early detection (mammograms, Pap tests, and colorectal and prostate cancer screening tests). In recent years, questions were added to the BRFSS survey to help public health professionals determine cancer prevalence in their states.

BRFSS is the world’s largest ongoing telephone health survey. It has tracked health conditions and risk behaviors in the United States yearly since 1984. In 2009, respondents were asked the following four survivorship questions. These questions will be repeated every five years.

1. Have you ever been told by a doctor, nurse, or other health care professional that you had cancer?
2. [If yes] At what age were you told that you had cancer?
3. How many different types of cancer have you had?
4. [If one] What type of cancer was it?
   [Or if more than one] With your most recent diagnosis of cancer, what type of cancer was it?

In addition, states may choose to ask the questions on the Cancer Survivorship Module, which measures follow-up care (who is providing the care and where), treatment plans, and pain management. In 2010, 10 states administered the module.

Data collected from the survey are used to describe the health behavior and health status of cancer survivors. This information is used for cancer control planning and implementing activities for cancer survivors at the state level.

National Health Interview Survey (NHIS)

The National Health Interview Survey (NHIS) has been monitoring the health of the nation since 1957. With the help of the U.S. Census Bureau, national-level household data is collected on health status, health care access, and prevention practices.

In 2010, CDC’s Division of Cancer Prevention and Control, the National Cancer Institute, and the National Center of Health Statistics worked together to add a set of questions addressing issues of importance to cancer survivors. The questions included topics such as cancer prevention (nutrition, physical activity, and tobacco and alcohol use) and early detection practices (such as cancer screening). Similar questions had not appeared in the NHIS since 1992. These questions give us much-needed data on how cancer survivors are doing in the United States and inform the development of new programs and policies for cancer survivors at the national level.

Medical Expenditure Panel Survey Experiences with Cancer Survivorship Supplement

The Medical Expenditure Panel Survey (MEPS) is a nationwide survey that represents people of all ages in the United States, conducted by the Agency for Healthcare Research and Quality (AHRQ). Through five rounds of in-person interviews over a two-year period, it gathers information about how people use health care and the amount of money they spend on health care. The MEPS is given to selected people who participated in the National Health Interview Survey the year before.

The MEPS Experiences with Cancer Survivorship Supplement is a special set of questions for people who have cancer. The Experiences with Cancer questionnaire asks cancer survivors about—

• The financial costs of cancer.
• Access to health care.
• The ability to work and to do normal daily activities.
• Use of health care and money spent on health care.
• Use of prescription drugs.

Data from the supplement are available to the public as part of the MEPS HC-147: 2011 Full Year Consolidated Data File.

CDC is working with the National Cancer Institute, the American Cancer Society, the National Institutes of Health’s Office of Behavioral and Social Sciences Research, LIVESTRONG, and the AHRQ on this supplement.

Published Articles

Rohan EA, Townsend JS, Fairley TL, Stewart SL. Health behaviors and quality of life among colorectal cancer survivors. Journal of the National Comprehensive Cancer Network 2015;13(3):297–302.

Li C, Li C, Forsythe L, Lerro C, Soni A. Mental health services utilization and expenditures associated with cancer survivorship in the United States. Journal of Cancer Survivorship 2015;9(1):50–58.

Han X, Lin CC, Li C, de Moor JS, Rodriguez JL, Kent EE, Forsythe LP. Association between serious psychological distress and health care use and expenditures by cancer history. Cancer 2015;121(4):614–622.

Zhao G, Okoro CA, Li J, White A, Dhingra S, Li C. Current depression among adult cancer survivors: findings from the 2010 Behavioral Risk Factor Surveillance System. Cancer Epidemiology 2014;38(6):757–764.

Ekwueme DU, Yabroff KR, Guy Jr GP, Banegas MP, de Moor JS, Li C, Han X, Zheng Z, Soni A, Davidoff A, Rechis R, Virgo KS. Medical costs and productivity losses of cancer survivors—United States, 2008–2011. MMWR 2014;63(23):505–510.

Guy GP Jr., Yabroff KR, Ekwueme DU, Wilder Smith A, Dowling E, Rechis R, Nutt S, Richardson L. Estimating the health and economic burden of cancer among those diagnosed as adolescents and young adults. Health Affairs 2014;33(6):1024–1031.

Yabroff KR, Guy GP Jr., Ekwueme DU, McNeel T, Rozjabek HM, Dowling E, Li C, Virgo KS. Annual patient time costs associated with medical care among cancer survivors in the United States. Medical Care 2014;52(7):594–601.

Buchanan ND, King JB, Rodriguez JL, White A, Trivers KF, Forsythe LP, Kent EE, Rowland J, Sabatino S. Changes among U.S. cancer survivors: comparing demographic, diagnostic, and health care findings from the 1992 and 2010 National Health Interview Surveys. ISRN Oncology 2013;2013:238017.

Guy GP Jr., Ekwueme DU, Yabroff KR, Dowling EC, Li C, Rodriguez JL, de Moor JS, Virgo KS. Economic burden of cancer survivorship in the United States. Journal of Clinical Oncology 2013;31(30):3749–3757.

Yabroff KR, Short PF, Machlin S, Dowling E, Rozjabek H, Li C, McNeel, Ekwueme DU, Virgo KS. Access to preventive health care for cancer survivors. American Journal of Preventive Medicine 2013;45(3):304–312.

Dowling EC, Chawla N, Forsythe LP, de Moor J, McNeel T, Rozjabek HM, Ekwueme DU, Yabroff KR. Lost productivity and burden of illness in cancer survivors and individuals with and without other chronic conditions. Cancer 2013;119(18):3393–3401.

Yabroff KR, Dowling E, Rodriguez J, Ekweume D, Meissner H, Soni A, Lerro C, Willis G, Forsythe LP, Borowski L, Virgo KS. The Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Survivorship supplement. Journal of Cancer Survivorship 2012;6(4):407–419.

Lerro CC, Stein KD, Smith T, Virgo KS. A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000–2011. Journal of Cancer Survivorship 2012;6(2):115–145.