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Gathering Data on Cancer Survivors

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 weight gain as measured by 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 informs cancer control planning and implementation activities for cancer survivors at national and state levels.

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 U.S. and inform the development of new programs and policies for cancer survivors at the national level.

Prevention Behavior Among Five-Year Colorectal Cancer Survivors

CDC researchers are working with the California Cancer Registry and the Public Health Institute to conduct a survey of colorectal cancer survivors who were diagnosed in 2003 or 2004. The survey was completed in 2011 and is being analyzed. It contained questions on prevention behaviors (including nutrition, physical activity, smoking, alcohol consumption, and weight management) and early detection practices (colorectal cancer screening, mammography and Pap test use, and prostate specific antigen testing). Questions on respondents' health history, quality of life, satisfaction with medical care, and familiarity with health behavior recommendations also were included. Results from this survey will help inform the development of interventions and programs that address the needs of long-term cancer survivors.

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