2. A Community Engaged Approach: The Terminate Lung Cancer (TLC) Study Roberto Cardarelli, DO, MPH, FAAFP Professor of Family and Community Medicine Chief of the Division of Community Medicine Director, Kentucky Ambulatory Network 1 Kentucky Cancer Consortium June 19, 2015

3. Funded by: CCTS/ATRN and Markey Cancer Center 7/2014-6/2016 2

4. Team  Roberto Cardarelli, DO, MPH (Principal Investigator)  Tony Weaver, MD  Jamie Studts, PhD  Fran Feltner, DNP  Gretchen Holmes, PhD  Kathryn Cardarelli, PhD  Debra Armstrong, MSW, MPA  Jennifer Redmond, MPH, DrPH  Elmer Whitler, MPA  Karen Roper, PhD  Community/ATRN Partners  David Reese, MA, MPH, FRSPH (Co- Principal Investigator)  Dana Shaffer, DO  HomePlace Team  Michelle Ledford (CHW Hazard)  Barbara Justice (CHW Pikeville)  Shirley Prater (CHW Morehead)  Janet Kegley (Regional Coordinator)  Helen Collett (Regional Coordinator)  Ralph Fugate (Regional Coordinator) 3

5. Why do lung cancer screening (research)? It’s Bad Lung cancer is the leading cause of all cancer deaths in the United States Current 5-year survival rate for all stages combined is only 16% Worse in KY #1 cause of cancer death in Kentucky, dramatically exceeding the national mortality rate (73.2 KY vs. 49.5 U.S. deaths per 100,000) The 5-year survival rate is 52% for those diagnosed at a localized stage, however only 15% of lung cancers are detected prior to spread 4 New USPSTF Rec Other national health organizations, including the American Cancer Society and the American Association for Thoracic Surgery, among others, have also published formal screening guidelines Based on seminal findings of the National Lung Screening Trial, a large randomized trial that found a 20% relative reduction in lung cancer mortality through low-dose CT (LDCT) lung screening in current or former heavy smokers compared to plain chest x- rays

6. Why Study a Community Engaged Approach? Provider education Patient education Community awareness? 5 NEW GUIDELINES

7. Aims 1.) Develop a community outreach campaign in Eastern Kentucky through a formative assessment involving high-risk target populations (Age 55-80, Smoking > 30 pack year, quit smoking <15 years ago), 2.) Implement the community outreach intervention in two regions in Eastern Kentucky (Morehead, Hazard) to assess the uptake of low- dose chest CTs (LDCTs), and 3.) Assess the impact of Community Health Workers (CHWs) in one of two campaign regions on the uptake of LDCT. 6

8. Methods Focus Groups Recruitment by CHWs Train CHWs as Moderators CAB development Develop and Implement TLC Campaign Qualitative analyses: Themes and messages Team develops campaign with CAB rep and CAB input and review Measurement LDCT numbers 7

9. Study Regions 8

10. Focus Groups  2 groups in each region (10 people per group)  Must meet criteria for lung cancer screening (Age 55-80, Smoking > 30 pack year, quit smoking <15 years ago)  CHWs conducted the recruitment  CHWs were trained to moderate the focus groups  Community trust  Buy-in  The right thing to do  New skill we provide to HomePlace Program  $40 to participate (1-1.5 hours)  1 person selected in each group to be on CAB (will get $40 for each study activity they participate in)  1 CAB Representative to work with “Research Study Team” 9

11. Focus Group Moderator Guide ActivityDomainsStem Question Assess baseline understanding regarding lung cancer screening Knowledge and attitudes “What have you heard about screening for lung cancer?” Review basic information regarding lung cancer screening Lung cancer risk factors and current evidence regarding lung cancer screening N/A Assess receptivity to lung cancer screening Message content “Based on what you heard today about…what is the most important message that needs to be relayed to encourage you to be screened for lung cancer?” Message appeals “What things will resonate with folks in terms of what benefits them or what they get out of it?” Message design and implementation “If you were designing an ad about lung cancer screening, what things about the ad would make it trustworthy? engaging? relevant to you?” Message sources “What or who would you suggest would be the best way to deliver the message that would be considered trustworthy and relevant?” Message communication channels “What channels or ways are best to get the message or advertise it?” Disseminator factors “How many ways or times do you think it would be needed for someone to hear or see the ad or information about…before it sticks?” Review available lung cancer screening materials (NOTE: These will be identified at the time focus groups will be performed) Reponses to publicly available lung cancer screening materials “Here are materials that we gathered about lung cancer screening that other organizations developed. What is your opinion about these items based on things we talked about earlier?” 10

12. Campaign Development DesignImplement Interpret Data and Develop Campaign Review and Input by CAB Formative Data Themes and Messages Exclude cross- over Implement Campaign in the 2 Intervention Regions Data 11

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14. Focus Group Results

15. Terminate Lung Cancer Focus Groups (N=54) n*% Smoking status Current smokers3463.0% Past smokers2037.0% Average years quit smoking**, mean (SD) 7.4(3.8) Pack years, mean (SD) Current smokers55.3(20.5) Past smoker61.7(34.4) Age, mean (SD)61.76(4.8) Gender Male2138.8% Female3361.1% Race/Ethnicity White54100% Marital Status Married3771.2% Divorced611.5% Widowed59.6% Separated23.8% Never married23.8% Number of children None3567.3% One59.6% Two611.5% Three or more611.5% Education level Grades 1-81019.2% Grade 9-111121.2% High school/GED2344.2% Some college815.4% College or above00% Employment status Employed815.4% No work >1 year11.9% Homemaker23.8% Retired2650.0% Unable to work1528.8% General health status Excellent/Very good47.7% Good1223.1% Fair2038.5% Poor1630.8% *May not equal to 54 due to missing data **For past smokers only

16. Focus Group Results Terminate Lung Cancer Focus Groups (N=54) n*% Smoking status Current smokers3463.0% Past smokers2037.0% Average years quit smoking**, mean (SD) 7.4(3.8) Pack years, mean (SD) Current smokers55.3(20.5) Past smoker61.7(34.4) Age, mean (SD)61.76(4.8) Gender Male2138.8% Female3361.1% Race/Ethnicity White54100% Marital Status Married3771.2% Divorced611.5% Widowed59.6% Separated23.8% Never married23.8% Number of children None3567.3% One59.6% Two611.5% Three or more611.5% Education level Grades 1-81019.2% Grade 9-111121.2% High school/GED2344.2% Some college815.4% College or above00% Employment status Employed815.4% No work >1 year11.9% Homemaker23.8% Retired2650.0% Unable to work1528.8% General health status Excellent/Very good47.7% Good1223.1% Fair2038.5% Poor1630.8% *May not equal to 54 due to missing data **For past smokers only

17. 16 Cumulative Terminate Lung Cancer Focus Group Results (54 participants) DomainsUtterances and summative responses Assess baseline understanding regarding lung cancer screening Breathing test is screening for lung cancer Computed Tomography (CT) scan-diagnostic X-ray Several “yes” would have done/will do screening All should be screened, especially if one smokes Many never heard of lung cancer screening Smoking is blamed more than it causes What does pack years mean? Certain age should be screened Biopsy PET scan Bone scan Ultrasound CT causes cancer- doc told me that Mining adds risk Eastern KY highest rate of lung cancer Centers of Disease Control and Prevention (CDC) making screening standard Cough blood to be screened No screening- up to the Lord when time is up Should be for young folks “Cancer” scary word Willing to have LDCT after education session? Yes-several of all groups Doctors are out for money Go to doc to get it/Why wouldn’t doctor order it? Two in one group (Lord will decide) One in another group “will think about it” Need to cough blood to have it? Coals miners and smokers should be tested Message content: “Based on what you heard today, what is the most important message that needs to be relayed to encourage you to be screened for lung cancer?” Early detection/catch it early has a better outcome Prevention Cost/Insurance should pay for it Treatment available Peace of mind High risk- it is worth it Quit smoking Age Breathing is bad Not going to hurt Picture of scan Do good once you have it Just need to ask for it For your family Screening available Going to die Emphasize “low dose” Black lung vs. Cancer-confusion What if you do not want to know? Message appeals “What things will resonate with folks in terms of what benefits them or what they get out of it?” See someone with lung cancer; testimony; TV visual Link to family; grandparents want to see kids grow up Cost issues/Free exams Going to die/Increased survival Fear to know/denial-barrier Know symptoms Feel better if you knew Message design and implementation “If you were designing an ad about lung cancer screening, what things about the ad would make it trustworthy, engaging, and relevant to you?” Testimony, saved by screening “Those TV visuals” Link to family Scare tactic don’t work; Too visual not good Statistics of benefit; Facts Simple message Picture in ad Picture of healthy lung and bad lung All can get it Young people should be the focus Love yourself; Your life is important Cost important Family history of lung cancer Message sources “What or who would you suggest would be the best way to deliver the message that would be considered trustworthy and relevant?” Family doc(tor) Testimony; See visual Heart doc(tor); Specialists During annual exams Insurance (Health) who cover screening should directly send info Markey Cancer Center Avoid company doc(tors); radiologists reading scans Hospital Church Media 50/50 trustworthy Many do not have computers Message communication channels “What channels or ways are best to get the message or advertise it?” Doctor offices and exam rooms- place flyers and information Medical provider; During annual exam Internet, Google, Bing Flyer in grocery store (Walmart, Food City, Lowes) Commercials/TV Mayo clinic.com WebMD Direct mail Newspaper advertisement; insert story Radio Community meetings Billboard Employers/Businesses Health Department Mobile unit Talk shows Library Word of mouth Cancer Society To high schools; get them young Advertisement No computer Facebook

18. 17 Cumulative Terminate Lung Cancer Focus Group Results (54 participants) DomainsUtterances and summative responses Assess baseline understanding regarding lung cancer screening Breathing test is screening for lung cancer Computed Tomography (CT) scan-diagnostic X-ray Several “yes” would have done/will do screening All should be screened, especially if one smokes Many never heard of lung cancer screening Smoking is blamed more than it causes What does pack years mean? Certain age should be screened Biopsy PET scan Bone scan Ultrasound CT causes cancer- doc told me that Mining adds risk Eastern KY highest rate of lung cancer Centers of Disease Control and Prevention (CDC) making screening standard Cough blood to be screened No screening- up to the Lord when time is up Should be for young folks “Cancer” scary word Willing to have LDCT after education session? Yes-several of all groups Doctors are out for money Go to doc to get it/Why wouldn’t doctor order it? Two in one group (Lord will decide) One in another group “will think about it” Need to cough blood to have it? Coals miners and smokers should be tested Message content: “Based on what you heard today, what is the most important message that needs to be relayed to encourage you to be screened for lung cancer?” Early detection/catch it early has a better outcome Prevention Cost/Insurance should pay for it Treatment available Peace of mind High risk- it is worth it Quit smoking Age Breathing is bad Not going to hurt Picture of scan Do good once you have it Just need to ask for it For your family Screening available Going to die Emphasize “low dose” Black lung vs. Cancer-confusion What if you do not want to know? Message appeals “What things will resonate with folks in terms of what benefits them or what they get out of it?” See someone with lung cancer; testimony; TV visual Link to family; grandparents want to see kids grow up Cost issues/Free exams Going to die/Increased survival Fear to know/denial-barrier Know symptoms Feel better if you knew Message design and implementation “If you were designing an ad about lung cancer screening, what things about the ad would make it trustworthy, engaging, and relevant to you?” Testimony, saved by screening “Those TV visuals” Link to family Scare tactic don’t work; Too visual not good Statistics of benefit; Facts Simple message Picture in ad Picture of healthy lung and bad lung All can get it Young people should be the focus Love yourself; Your life is important Cost important Family history of lung cancer Message sources “What or who would you suggest would be the best way to deliver the message that would be considered trustworthy and relevant?” Family doc(tor) Testimony; See visual Heart doc(tor); Specialists During annual exams Insurance (Health) who cover screening should directly send info Markey Cancer Center Avoid company doc(tors); radiologists reading scans Hospital Church Media 50/50 trustworthy Many do not have computers Message communication channels “What channels or ways are best to get the message or advertise it?” Doctor offices and exam rooms- place flyers and information Medical provider; During annual exam Internet, Google, Bing Flyer in grocery store (Walmart, Food City, Lowes) Commercials/TV Mayo clinic.com WebMD Direct mail Newspaper advertisement; insert story Radio Community meetings Billboard Employers/Businesses Health Department Mobile unit Talk shows Library Word of mouth Cancer Society To high schools; get them young Advertisement No computer Facebook

19. 18 Cumulative Terminate Lung Cancer Focus Group Results (54 participants) DomainsUtterances and summative responses Assess baseline understanding regarding lung cancer screening Breathing test is screening for lung cancer Computed Tomography (CT) scan-diagnostic X-ray Several “yes” would have done/will do screening All should be screened, especially if one smokes Many never heard of lung cancer screening Smoking is blamed more than it causes What does pack years mean? Certain age should be screened Biopsy PET scan Bone scan Ultrasound CT causes cancer- doc told me that Mining adds risk Eastern KY highest rate of lung cancer Centers of Disease Control and Prevention (CDC) making screening standard Cough blood to be screened No screening- up to the Lord when time is up Should be for young folks “Cancer” scary word Willing to have LDCT after education session? Yes-several of all groups Doctors are out for money Go to doc to get it/Why wouldn’t doctor order it? Two in one group (Lord will decide) One in another group “will think about it” Need to cough blood to have it? Coals miners and smokers should be tested Message content: “Based on what you heard today, what is the most important message that needs to be relayed to encourage you to be screened for lung cancer?” Early detection/catch it early has a better outcome Prevention Cost/Insurance should pay for it Treatment available Peace of mind High risk- it is worth it Quit smoking Age Breathing is bad Not going to hurt Picture of scan Do good once you have it Just need to ask for it For your family Screening available Going to die Emphasize “low dose” Black lung vs. Cancer-confusion What if you do not want to know? Message appeals “What things will resonate with folks in terms of what benefits them or what they get out of it?” See someone with lung cancer; testimony; TV visual Link to family; grandparents want to see kids grow up Cost issues/Free exams Going to die/Increased survival Fear to know/denial-barrier Know symptoms Feel better if you knew Message design and implementation “If you were designing an ad about lung cancer screening, what things about the ad would make it trustworthy, engaging, and relevant to you?” Testimony, saved by screening “Those TV visuals” Link to family Scare tactic don’t work; Too visual not good Statistics of benefit; Facts Simple message Picture in ad Picture of healthy lung and bad lung All can get it Young people should be the focus Love yourself; Your life is important Cost important Family history of lung cancer Message sources “What or who would you suggest would be the best way to deliver the message that would be considered trustworthy and relevant?” Family doc(tor) Testimony; See visual Heart doc(tor); Specialists During annual exams Insurance (Health) who cover screening should directly send info Markey Cancer Center Avoid company doc(tors); radiologists reading scans Hospital Church Media 50/50 trustworthy Many do not have computers Message communication channels “What channels or ways are best to get the message or advertise it?” Doctor offices and exam rooms- place flyers and information Medical provider; During annual exam Internet, Google, Bing Flyer in grocery store (Walmart, Food City, Lowes) Commercials/TV Mayo clinic.com WebMD Direct mail Newspaper advertisement; insert story Radio Community meetings Billboard Employers/Businesses Health Department Mobile unit Talk shows Library Word of mouth Cancer Society To high schools; get them young Advertisement No computer Facebook

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22. Campaign  Website  Guidelines, CMS/USPSTF Crosswalk, and SDM disseminated to 450+ providers in interventions regions  2 nd letter to the same 450+ providers marketing website and roundtable events  Morehead roundtable event  64,000 post cards printed- being disseminated to 60+ primary care office, Ag extension offices, and health departments in the intervention regions  Ads running every 2 –weeks in 17 community newspapers  Morehead region NPR- ads twice daily for 6-months  Hazard region working with 2 radio stations to also have ads  WalMart, FoodCity, Lowes corporate office said “NO”  -CARRY OVER FUNDS>>?direct mailers 21

23. Value-added to the Community >85% of budget to Eastern KY $10,000 Campaign Awareness dissemination Patient voice- inform other campaigns 22

24. Next steps  In process of campaign implementation  LDCT rates  Random phone surveys 23

25. Thank you!  Questions?  Roberto.Cardarelli@uky.edu  (859) 323-3711 24