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Developing Cancer Survivorship Data Sources for Comprehensive Cancer Control: Proposed BRFSS 2009 Modules Temeika L. Fairley, PhD Centers for Disease Control and Prevention National Center for Chronic Disease Prevention and Health Promotion Division of Cancer Prevention and Control

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Developing Cancer Survivorship Data Sources for Comprehensive Cancer Control: Proposed BRFSS 2009 Modules

Temeika L. Fairley, PhD

Centers for Disease Control and Prevention

National Center for Chronic Disease Prevention and Health Promotion

Division of Cancer Prevention and Control


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Acknowledgements

  • Comprehensive Cancer Control Branch (CCCB)

  • Program Directors for the National Comprehensive Cancer Control Program (NCCCP)

  • DCPC Inter-branch Survivorship Work Group

  • CCC National Partners


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Comprehensive Cancer Control:

Comprehensive Cancer Control is a collaborative process through which a community pools resources to reduce the burden of cancer .


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Comprehensive Cancer Control

Involves the integration of cancer prevention and detection activities including:

  • Research

  • Evaluation

  • Health Education and Communication

  • Program development

  • Public Policy

  • Surveillance

  • Clinical Services


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Results of CCC Programs

  • Risk Reduction

  • Early Detection

  • Better Treatment

  • Enhanced Survivorship

  • Reduce Health Disparities

Photo courtesy the Alaska Native Tribal Health Consortium, © Clark James


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  • There were approximately 10.1 million cancer survivors in the United States.

    NCI. SEER Cancer Statistics Review, 1975-2002.

  • The number of cancer survivors in the United States increased steadily during the past three decades:

    CDC/NCI. MMWR 2004;53:526-529.

  • Increased from 3.0 million (1.5% of the U.S. population) in 1971 to 9.8 million (3.5%) in 2001.

    CDC. Cancer Survivorship–United States 1971-2001. MMWR. 2004: 53:526-529.


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Enhanced Survivorship the United States.

  • Enhance quality of life for cancer survivors

    • Physical

    • Psychological

    • Practical (i.e., financial and legal issues, health insurance, long-term planning)

  • Study interventions that promote healthand well-being

    • Exercise

    • Pain management

    • Coping


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Pennsylvania the United States.

Assessing the unmet psychosocial needs of cancer patients and their caregivers, across all stages of cancer and all care settings

Survivorship Program Example


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History of proposed BRFSS Cancer Survivorship Modules the United States.

  • August 2006--CCC Midwest Regional Evaluation Meeting:

    • Request development of comprehensive cancer control modules for inclusion on BRFSS surveys

    • Modules correspond to proposed outcomes measures for CCC (i.e., lacking state level data sources)


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History of proposed BRFSS Cancer Survivorship Modules the United States.

  • Reports recommending cancer survivorship data collection/surveillance:

    • National Action Plan for Cancer Survivorship (2004)

    • Presidents Cancer Panel Report (2004)

    • Institute of Medicine Report (2006)


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History of proposed BRFSS Cancer Survivorship Modules the United States.

  • National Health Interview Survey (1992)

    • Cancer Control Supplement and Cancer Epidemiology Supplement

    • Cancer Survivorship Section

      • 18 questions--treatment, insurance, support, etc.

      • 24,040 respondents-->1553 cancer survivors

  • State-added BRFSS (2000-2006)

    • Cancer Prevalence Questions (6+ states)


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  • Our ultimate goal is to assist CCC programs in using data from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

    • Identify issues of cancer survivors

    • Establish and monitor health goals for cancer survivors

    • Design and evaluate cancer survivorship intervention programs and policies

    • Support research

    • Raise awareness and educate about cancer survivorship


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BRFSS from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…


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Behavioral Risk Factor from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…Surveillance System (BRFSS)

  • Established in 1984

  • Largest continuously conducted telephone health survey in the world

  • 355,710 interviews in 2006

  • 50 states, the District of Columbia, Puerto Rico, the Virgin Islands, and Guam


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Behavioral Risk Factor from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…Surveillance System (BRFSS)

  • Collects information from adults aged 18 years and older

  • Monitor risk behaviors related to

    • chronic diseases, injuries, and death

    • use of preventive services

  • Effective tool in preventing disease and promoting health


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Establish and Track Health Objectives from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

  • Healthy People 2010 Objectives

  • Chronic Disease Indicators

  • State Goals & Objectives


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Develop and Evaluate Programs: from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…Steps to a HealthierUS


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1990 from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

Identify Emerging Health Problems:

Obesity Trends* Among U.S. Adults — 1990, 1996, 2004

(*BMI 30, or about 30 lbs overweight for 5’4” person)

1996

2004

No Data

<10%

10%-14%

15%-19%

20%-24%

 25%


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Prevalence of Obesity* Among U.S. Adults from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

(*BMI 30, or about 30 lbs overweight for 5’4” person)

1996

1990

2004

No Data

<10%

10%–14%

15%–19%

20%-24%

25%

Prevalence of Diabetes* Among U.S. Adults

(*Includes gestational diabetes)

1990

1996

2004

No Data

<4%

4%-6%

6-8%

8-10%

>10%


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Prevalence of Multiple Risk Factors from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…* for Heart Disease and Stroke Among U.S. Adults

Percent of Population with 2 or More Risk Factors, Age-adjusted to 2000 U.S. Population

1991

1995

1999

No Data

<22%

22%–24.9%

25%-29.9%

30%

* Risk factors include high blood pressure, high blood cholesterol, smoking, obesity and diabetes. Source: Greenlund et al. Archiv Intern Med 2004;164:181-8


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Support Policies and Legislation: from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…Prevalence of Safety Belt Use, 2002

Areas with primary safety belt laws

Prevalence > 80% of always using a safety belt among persons aged > 18 years.

Prevalence < 80% of always using a safety belt among persons aged > 18 years.

Source: CDC. Impact of primary laws on adult use of safety belts – United States, 2002. MMWR 2004;53:257-260.


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Questionnaire Development from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

Program submit proposal

Fixed core

Rotating core

Optional module

Internal and External Review

Cognitive Testing – 2 Phases*

Final modifications

Proposals submitted to coordinators

Coordinators vote = topic of public health importance


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BRFSS 2007 Core Topics from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…


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BRFSS 2007 Rotating Core Questions from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…


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BRFSS 2007 Optional Modules from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

Actions to Control High Blood Pressure

Adult Asthma History

Arthritis Management

Cardiovascular Health

Childhood Asthma Prevalence

Colorectal Cancer Screening*

Diabetes

General Preparedness

Healthy Days (Symptoms)

Heart Attack and Stroke


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BRFSS 2007 Optional Modules from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

Intimate Partner Violence

Mental Illness and Stigma

Random Child Selection Module

Reactions to Race

Sexual Violence

Prostate Cancer Screening*

Women’s Health*

Visual Impairment & Access to Eye Care

Veterans Health Status


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Examples of State Added Questions from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

Earthquake emergency preparedness

West Nile Virus

Bioterrorism

Cancer Prevalence*

Suicide

Osteoporosis

Food handling


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Proposed from the BRFSS, at the local, state, and federal levels, to meet public health needs such as… Cancer Prevalence and Survivorship Questions


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2009 BRFSS Questionnaire: from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…Emerging Core Questions (n=4)

  • Cancer prevalence

    • Allow state-level assessment of health status or behavioral risks for cancer survivors (e.g., smoking prevalence among cancer survivors, health screenings among cancer survivors, etc.)

  • Source of questions

    • 1992 NHIS Cancer Survivorship Supplement

    • State BRFSS cancer prevalence questions


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Proposed from the BRFSS, at the local, state, and federal levels, to meet public health needs such as… Cancer Prevalence Questions

1. Have you ever been told by a doctor that you had cancer?

2. How many different kinds of cancer have you had?

3. [If more than 1] The last time you were diagnosed with cancer, what type of cancer was it, or in what part of the body did the cancer start?

OR

[If only 1] What type of cancer was it, or in what part of the body did the cancer start?

4. At what age or in what year were you first told that you had cancer?


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2009 BRFSS Questionnaire: from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…Optional Module Questions (n=10)

  • Cancer survivorship

    • Allow state-level assessment of survivorship issues related to cancer treatment, pain, and access to care.

  • Source of questions

    • 1992 NHIS Cancer Survivorship Supplement

    • State CCC programs, CDC staff


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Proposed from the BRFSS, at the local, state, and federal levels, to meet public health needs such as… Cancer Survivorship Questions

1. What types of doctors did you see for your cancer treatment?

2. What types of doctors do you see now for your follow-up cancer care?

3. What types of treatment did you receive for this recent cancer?

4. After you finished treatment for cancer, did a doctor, nurse, or other health professional ever give you a written summary of all the treatments that you received?

5. Have you ever received advice from a doctor, nurse, or other health professional about where you should return or who you should see for routine check-ups after completing treatment for cancer?


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Proposed from the BRFSS, at the local, state, and federal levels, to meet public health needs such as… Cancer Survivorship Questions (2)

6. Did you have health insurance that paid for all or part of your cancer treatment?

7. Were you EVER denied health insurance or life insurance coverage because of your cancer?

8. Did you participate in a research study or clinical trial as part of your cancer treatment?

9. Do you feel that you have chronic pain related to your cancer or cancer treatment?

10. Do you feel that your pain is currently well managed?


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Where we are now…Keep Hope Alive! from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

  • Application process:

    • 2 rounds of cognitive testing and revision

    • March 2008: Proposals presented at 2008 BRFSS conference.

    • April 2008: 2009 questionnaire finalized

  • CCC program involvement

    • Communication with state BRFSS coordinators about the importance of these questions/modules


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Contact Information! from the BRFSS, at the local, state, and federal levels, to meet public health needs such as…

Temeika L. Fairley, PhD: [email protected]

Phone: 770-488-4518


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