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

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

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

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

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

 There were approximately 10.1 million cancer survivors in the United States. NCI. SEER Cancer Statistics Review,  The number of cancer survivors in the United States increased steadily during the past three decades: CDC/NCI. MMWR 2004;53:  Increased from 3.0 million (1.5% of the U.S. population) in 1971 to 9.8 million (3.5%) in CDC. Cancer Survivorship–United States MMWR. 2004: 53:

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 health and well-being Exercise Pain management Coping Enhanced Survivorship

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

History of proposed BRFSS Cancer Survivorship Modules August 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)

History of proposed BRFSS Cancer Survivorship Modules Reports recommending cancer survivorship data collection/surveillance: National Action Plan for Cancer Survivorship (2004) Presidents Cancer Panel Report (2004) Institute of Medicine Report (2006)

History of proposed BRFSS Cancer Survivorship Modules 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 ( ) Cancer Prevalence Questions (6+ states)

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

BRFSS

Behavioral Risk Factor Surveillance System (BRFSS) Established in 1984 Largest continuously conducted telephone health survey in the world 355,710 interviews in states, the District of Columbia, Puerto Rico, the Virgin Islands, and Guam

Behavioral Risk Factor 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

Establish and Track Health Objectives Healthy People 2010 Objectives Chronic Disease Indicators State Goals & Objectives

Develop and Evaluate Programs: Steps to a HealthierUS

Identify Emerging Health Problems: Obesity Trends* Among U.S. Adults — 1990, 1996, 2004 No Data<10%10%-14%15%-19%20%-24%  25% (*BMI  30, or about 30 lbs overweight for 5’4” person)

Prevalence of Obesity* Among U.S. Adults Prevalence of Diabetes* Among U.S. Adults (*Includes gestational diabetes) No Data<4%4%-6%6-8%8-10% No Data<10%10%–14%15%–19%20%-24%  25% >10% (*BMI  30, or about 30 lbs overweight for 5’4” person)

Prevalence of Multiple Risk Factors * for Heart Disease and Stroke Among U.S. Adults *Risk factors include high blood pressure, high blood cholesterol, smoking, obesity and diabetes. Source: Greenlund et al. Archiv Intern Med 2004;164:181-8 No Data<22%22%–24.9%  25%-29.9%  30% Percent of Population with 2 or More Risk Factors, Age-adjusted to 2000 U.S. Population

Areas with primary safety belt laws Prevalence > 80% of always using a safety belt among persons aged > 18 years. Prevalence 18 years. Source: CDC. Impact of primary laws on adult use of safety belts – United States, MMWR 2004;53: Prevalence > 80% of always using a safety belt among persons aged > 18 years. Prevalence 18 years. Source: CDC. Impact of primary laws on adult use of safety belts – United States, MMWR 2004;53: Support Policies and Legislation: Prevalence of Safety Belt Use, 2002

Questionnaire Development 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 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

BRFSS 2007 Core Topics Demographics Alcohol Consumption Hypertension Awareness Health Status Exercise Cholesterol Awareness Health Care Access Immunization Arthritis Burden Healthy Days HIV/AIDS Physical Activity Life Satisfaction Diabetes Fruits and Vegetables Emotional Support Asthma Disability Cardiovascular Disease Tobacco Use Emerging Issues Oral Health Veteran’s Status

BRFSS 2007 Rotating Core Questions Hypertension Awareness Cholesterol Awareness Arthritis Burden Physical Activity Fruits and Vegetables

BRFSS 2007 Optional Modules 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 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

BRFSS 2007 Optional Modules 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 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

Examples of State Added Questions Earthquake emergency preparedness West Nile Virus Bioterrorism Cancer Prevalence* Suicide Osteoporosis Food handling Earthquake emergency preparedness West Nile Virus Bioterrorism Cancer Prevalence* Suicide Osteoporosis Food handling

Proposed Cancer Prevalence and Survivorship Questions

2009 BRFSS Questionnaire: 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

Proposed 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?

2009 BRFSS Questionnaire: 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

Proposed 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?

Proposed 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?

Where we are now…Keep Hope Alive! 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

Contact Information! Temeika L. Fairley, PhD: Phone: