Progress, preliminary results and

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Colon Cancer Patterns of Care in Chicago Progress, preliminary results and future directions Presented by Garth Rauscher, PhD IHRP Brown Bag Lecture January 23, 2013

U.S. CRC Mortality (1960 2005) Soneji S, Iyer SS, Armstrong K, Asch DA. Racial Disparities in Stage-Specific Colorectal Cancer Mortality: 1960-2005. Am J Public Health. 2010 October 1, 2010;100(10):1912-6. 2

Colon Cancer Patterns of Care in Chicago Goals 1. Examine how prior screening and mode of detection contributes to racial disparities in stage at diagnosis. 2. Identify factors related to delays in diagnosis and treatment in AA and NHW colon cancer patients. 3. Identify factors related to whether AA and NHW colon cancer patients receive the standard of diagnosisandand treatment for colon cancer. 3

Conceptual Model Demographic: Age at Diagnosis Race/Ethnicity Gender Resources: Income Education Insurance Access/utilization: Perceived access Habits of health care utilization Provider communication Attitudes/beliefs: Cultural Religious Prior screening Timing Modality Mode of Detection Asymptomatic Symptomatic Delay Presentation Diagnosis Treatment Diagnosis/Treatment Abdominal scan Surgery Chemotherapy Tumor location Stage at Diagnosis 4

Colon Cancer Patterns of Care in Chicago Study Implementation 5

Colon Cancer Patterns of Care in Chicago Project 2 of The Center of Excellence in Eliminating Disparities (CEED) (Calhoun/Ferrans) 1 P60MD003424 01 NCMHD 5 years Planned interviews and medical record abstractions (N= 500) of newlydiagnosed cases of colon cancer in AA and NHW men and women Pti Patient tascertainment ti tat non UIC sites: Advocate Christ Hospital (Renee Jacobs, MD) Advocate Illinois Masonic (Deepti Singh MD) Rush Medical Center (Marc Brand, MD) Northwestern Memorial Hospital (Amy Halverson, MD) University of Chicago (Blase Polite, MD) John H Stroger Hospital (Tom Lad, MD) Ingalls Health System (Mark Kozloff, MD) Advocate Trinity Hospital (Sanobar Khan, MD) 6

Colon Cancer Patterns of Care in Chicago Eligibility Requirments 1. First primary invasive colon cancer 2. Non Hispanic White or African American, and English speaking. 3. Aged 30 and 79 at diagnosis 4. Residents of Cook, Dupage, Lake or Will counties in Illinois, or residents of Lake County, Indiana at the time of diagnosis. 5. Earlist eligible date of diagnosed varies by site depending on when the site came on board. 7

Case Finding In order to capture a large variation of the patient population that receives treatment at each facility, it is important to identify patients who were colonoscopydetected, or had definitive surgery, or had first course chemotherapy h at your institution, i i or any combination i thereof, regardless of where else they might have received care. 8

9

10

Survey Research Laboratory Site identifies potentially eligible patient and enters data into REDCap SRL downloads cases, verifies eligibility, performs duplicate check against all cases from all sites. There are 3 different tables in REDCap (Stroger, Ingalls, and all others); each has its own unique download procedure. Moreover, constant, ongoing changes to REDCap database throughout study require tweaks of SRL programs Sample loading of new, eligible cases is done 4x/week into SRL s CATI system for case management; this allows for shorter appointment windows from screener to field. Introductory letters, personalized on hospital letterhead, co signed by site PI and Dr. Rauscher, along with study brochure are mailed so that recruitment packet is received no earlier than 45 days from surgery date (or date of diagnosis i in cases where no surgery needed). dd) To date, there have been 26 mailings; each mailing requires verification that site IRB up to date 11

Survey Research Laboratory Process involved for each patient If patients do not respond to mailing after two weeks, SRL begins telephone follow up; up to 15 contact attempts are made, as warranted. Interviews are scheduled at patients' preferred location (SRL, hospital, or home), and if the interview is at hospital, individual coordination with site steliaison aso is required ed for each appointment. t Confirmation letter mailed/e mailed to respondent with details of interview appointment During the interview appointment the interviewer Consents patient to interview and medical record abstraction (required) Conducts the interview Completes multiple medical release forms and obtains patient signature Data are exported from the laptop to central database and subject to quality control review. 10% of completes are validated; audio recorded portion of path to diagnosis are reviewed to ensure data recorded correctly in questionnaire; feedback provided to interviewer as needed 12

Computer Assisted Personal Interview 1. Habits of Health Utilization 2. Perceived Access to care 3. Knowledge of screening procedures and guidelines 4. Katz comorbidity scale 5. Prior history ofcolon problems or disease 6. Mode of detection 7. Diagnostic follow up events 8. Diagnostic colonoscopy 9. Liver/Abdominal scan 10. Surgeries 11. Chemotherapy 12. Patient Provider Communication 13. Regular provider / trust 14. Last routine physical 15. Last stool test 16. Last colonscopy 17. Last sigmoidoscopy 18. Last barium enema 19. Family history of colon cancer 20. Health insurance 21. Opinions about colon cancer 22. Felt loneliness 23. Perceived stress 24. Psychological consequences 25. Depression 26. Social support during diagnosis i 27. Several religiosity scales 28. Demographics 13

Colon Cancer Patterns of Care in Chicago Timeline for completed interviews across the sites 2011 2012 Oct Nov Dec Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec Total UIC 2 2 2 2 2 10 Advocate Masonic 1 1 2 3 2 1 2 12 Northwestern 2 4 1 5 6 3 5 3 1 30 University of Chicago 2 1 2 4 3 2 1 2 1 1 1 1 2 23 Rush Medical Center 2 4 4 5 6 4 1 3 2 1 8 1 41 Advocate Christ 13 1 1 3 1 8 1 2 30 Stroger Hospital 7 3 2 5 3 4 3 1 28 Advocate Trinity Ingalls Health System 2 2 8 10 8 22 17 15 14 6 13 16 7 15 7 11 7 176 14

Colon Cancer Patterns of Care in Chicago Preliminary results Preliminary results are based on the first 166 patient interviews and a subset of medical record abstractions 15

Colon Cancer Patterns of Care in Chicago Mode of detection Main finding of interest: men are considerably more likely than women to report (asymptomatic) screen detection of their colon cancer than women, and we don t know why. 16

Mode of detection Now, I would like you to read the four statements on Card B. Then, please tell me which statement best represents how you became aware, for the very first time, of the problem that was later diagnosed as colon cancer. Please give me the numberof the statementthat that best describesyour situation. <1> I was having problems or symptoms with my colon or bowel, so I went to the doctor. They did some tests and told me I had colon cancer. <2> I was having other problems, not with my colon or bowel, so I went to the doctor. They did some tests and told me I had colon cancer. <3> I was not having any problems with my colon or bowel. I got a test or procedure as a routine check, and my doctor told me there was a problem. <4> I was having a follow up colonoscopy, because a prior colonoscopy had found polyps or growths, and my doctor told me there was a problem. 17

Mode of detection Mode of Detection N % Problems with my colon 62 43 Other problems not with my colon 41 28 Asymptomatic screen 31 22 Asymptomatic follow up colonoscopy 10 7 18

Asy mpto matic (Scre een) Detect tion Demographics and screen detected colon cancer N % P Value Age at interview 0.008 18 to 49 23 0 50 to 65 78 33 66 and above 43 35 Race 0.51 nh White 71 31 nh Black 73 26 Gender 0.004 Female 73 18 Male 71 39 Education 0.03 < High school 20 15 High school 35 20 >High school 89 35 Annual Household Income 0.02 <25,000 44 18 25,000 <50,000 35 20 >50,000 49 39 Private health insurance 0.002 No 47 13 Yes 96 36 P values>0.2 are suppressed 19

Screen detection by race and gender 100 90 80 70 60 50 % Screen detection by race and gender (unadjusted) 40 (0.14) 30 20 10 0 16 19 49 (0.003) White Women Black Women White Men Black Men 31 20

Screen detection by race and gender 100 90 80 70 60 % Screen detection by race and gender (adjusted forage and facility) 50 40 30 20 17 21 42 (0.01) 32 (0.14) 10 0 White Women Black Women White Men Black Men 21

Excess risk of symptomatic detection in women Possible explanations? Differential accuracy of self reports Men more likely to report symptomatic as screen detected, than women? Colon cancer perceived as a male disease Gender differences in the effectiveness of screening that predispose women to cancer missed at screening More aggressive tumor biology in women? More proximally located tumors in women? Poorer quality of prep in women leading to more missed cancer? Gender differences inperception ofsymptomsandattribution attribution Do women sometimes misattribute colon cancer symptoms as being related to gynecologic/hormonal/reproductive issues? 22

Colon Cancer Patterns of Care in Chicago Stage at Diagnosis 23

Early Stag ge at Diagn osis Stage 1 vs. 234 N % Age at interview * 18 to 49 18 6 50 to 65 55 16 66 and above 38 26 Race + nh White 63 22 nh Black 48 13 Gender Female 61 18 Male 50 18 Education < High school 11 0 High school 27 26 >High school 73 18 Annual Household Income <25,000 27 11 25,000 <50,000 26 15 >50,000 54 24 Private insurance (diagnosis) * No 29 7 Yes 82 22 Mode of detection *** Symptoms 77 10 Screening 30 40 24

Colon Cancer Patterns of Care in Chicago Stage at Diagnosis Main finding of interest: A large percentage of patients are diagnosed with late stage colon cancer despite reporting screen detection of their cancer. 25

Why are so many patients with screen detected colon cancer still diagnosed with late stage disease? Predictors of late stage colon cancer among patients reporting screendetection. N % Age at interview 0.18 50 64 17 29 65+ 13 54 Race 0.22 nh White 19 32 nh Black 11 55 Gender Female 11 36 Male 19 42 Education <HS <=HS 7 43 >HS 23 39 Income 0.02 <50,000 8 75 >50,000 21 29 Prior colonoscopy No 16 44 Yes 14 36 Colon problem <6 month of diagnosis No 20 35 Yes 10 50 P values >0.3 are suppressed 26

Colon Cancer Patterns of Care in Chicago Delayed medical presentation, diagnosis, and treatment Main finding of interest: There is a racial disparity in prolonged clinical delay. 27

Prolonged Clin ical D elay Table. Predictors of prolonged clinical delay >90 days N % Age at interview 18 to 49 23 13 50 to 65 72 18 66 and above 42 19 Race * nh White 69 12 nh Black 68 24 Gender Female 70 16 Male 67 19 Education < High school 17 18 High school 34 15 >High school 86 19 Annual Household Income <25,000 42 17 25,000 <50,000 33 18 >50,000 55 18 Private insurance (diagnosis) No 50 18 Yes 87 17 +p<0.20,*p<0.10, **p<0.01, ***p<0.001 28

Prolonged Clin ical D elay Table. Clinical predictors of prolonged clinical delay >90 days N % Mode of detection * GI Symptoms 68 10 Non GI Symptoms 41 20 Asymptomatic 44 30 Number of diagnostic visits *** 0 30 10 1 62 11 2 34 18 3+ 27 44 Diagnostic colonoscopy + No 9 0 Yes 144 19 Abdominal scan No 55 16 Yes 88 18 Offered chemotherapy ** No 26 35 Yes 92 11 +p<0.20,*p<0.10, **p<0.01, ***p<0.001 29

Prolonged clinical delay by race and gender 100 90 80 70 60 50 % Prolonged clinical delay by race and gender (unadjusted) 40 (0.04) 04) 30 20 10 0 11 12 White Women White Men Black Women Black Men 21 31 30

Prolonged clinical delay by race and gender 100 90 80 % Prolonged clinical delay by race and gender (adjusted forage and clinical variables) 70 60 50 40 30 20 10 5 12 (0.10) (0.09) 23 24 0 White Women White Men Black Women Black Men 31

Diagnosis and Treatment As part of your diagnosis, did you have a colonoscopy? (94%) As part of, did you have a liver or other abdominal scan? (68%) Have you had any surgery to remove the cancer from your colon? (94%) Have you had an appointment or doctor's visit with a specialist, known as a medicaloncologist or chemotherapy doctor, about your colon cancer? (76%) Were you offered chemotherapy as part of the treatment plan, or has a doctor suggested that you need it? (79%) Did you agree to have chemotherapy? (95%) Have you begun chemotherapy yet? (95%) Have you finished getting all of the chemotherapy (17%) 32

Abdo minal Scan Predictors of receiving an abdominal scan at diagnosis Descriptive N % Age at interview 0.02 18 to 49 26 85 50 to 65 84 69 66 and above 47 57 Gender 0.95 Female 79 71 Male 78 65 Race nh White 81 72 nh Black 76 64 Education 0.001 <= High school 59 53 >High school 98 78 Annual Household Income 0.2 <25,000 42 62 25,000 <50,000 39 67 >50,000 68 74 Private insurance (diagnosis) No 53 64 Yes 104 70 Mode of detection GI symtpoms 69 72 Other problem 40 60 Asymptomatic 43 67 P values>0.2 are suppressed 33

Summary of preliminary results Men are more likely than women to report a screen detected colon cancer, a finding that to our knowledge has not been reported previously. Many patients with screen detected colon cancer are still being diagnosed with late stage cancer, which is troubling. Black patients t are more likely l to experience prolonged ddelays from medical presentation to treatment initiation, a finding that is not due to racial differences in clinical variables measured. Receipt of a diagnostic scan appears to be more common among higher SES and perhaps Black patients. When analyzing data it is important t to take into consideration how potential ti triaging related to prognosis might factor into the results. Results need to be examined within strata of race and gender, not just race. 34