1. Quality Of Care And Patient Outcomes In Breast Cancer Steven Katz M.D., M.P.H. Professor Departments of Medicine and Health Management and Policy Sarah Hawley Ph.D. Assistant Professor Department of Medicine University of Michigan

2. Research Goals Advance methods to use cancer registries to perform population studies of quality of cancer care Advance methods to use cancer registries to perform population studies of quality of cancer care Describe the context, process, and outcomes of cancer treatment decisions Describe the context, process, and outcomes of cancer treatment decisions Evaluate the impact of clinician and delivery system factors on the treatment experiences of patients Evaluate the impact of clinician and delivery system factors on the treatment experiences of patients Design interventions to improve quality Design interventions to improve quality

3. The Quality Gap Optimal Practice Community Practice Patient perspectives about care Health outcomes use of effective treatment Structure

4. Opportunities Partnered with SEER registries to perform population- based research to evaluate quality of care Partnered with SEER registries to perform population- based research to evaluate quality of care Engaged patients and their clinicians in the community Engaged patients and their clinicians in the community Promoted the use of SEER cancer registries Promoted the use of SEER cancer registries Advanced research Advanced research Measures Measures Sampling Sampling Data collection Data collection Informed Clinical and Health Policy Informed Clinical and Health Policy

5. Research Team MD U of M Public Health Nancy Janz Paula Lantz Mahasin Mujahid Medicine Sarah Hawley Amy Alderman Jennifer Griggs Barbara Salem Cancer Center American College Of Surgeons David Winchester Connie Bura Fox Chase Monica Morrow

6. Articles- Katz et al R01CA12345-01 Katz Correlates of treatment for DCIS JCO 2005 Katz Patient Involvement in surgical tx decisions JCO 2005 Morrow Correlates of Breast reconstruction J. Cancer 2005 Lantz Satisfaction with decision-making HSR 2005 Janz Correlates of QOL Quality Life Res 2005 Katz Treatment experiences of Latinas AJPH 2005 Katz Surgeon perspectives about treatment J. Cancer 2005 Fagerlin Informed consent: What do patients know? J. Patient Educ 2006 Hawley Correlates of Surgeon Variation in Tx Medical Care 2006 Lantz Correlates of Stage at Diagnosis AJPH 2006 Katz Correlates of patient referral to surgeons JCO 2007 Hawley Correlates of Involvement in Surg DM J. Patient Educ 2007 Opatt Conflicts in Decision Making for BC surgery Ann of Surg Onc 2007 Katz From Patients to Policy and Back Health Affairs 2007 Alderman Correlates of Referral for Reconstruction J. Cancer 2007 Waljee Patient Satisfaction: Does in matter where you go? JCO 2007 Janz Symptom Experience and Quality of Life J. Women’s Health 2007

8. Breaking The Mastectomy Over-treatment Myth

9. Compared to BCS w/radiation No difference in survival Little difference in local recurrence NCI, professional groups and advocates have endorsed BCS

10. Receipt of Mastectomy 1 by Race and Year 1. % for women with early stage disease, Source: SEERstat

11. U.S. legislation on “informed consent” 20 states have passed legislation that mandate physician disclosure of treatment alternatives for breast cancer 20 states have passed legislation that mandate physician disclosure of treatment alternatives for breast cancer Physician are required to give patients oral and written summaries of alternative Physician are required to give patients oral and written summaries of alternative Lantz P, Zemencuk J, Katz SJ. Is Mastectomy Over-Utilized?: A Call for a New Perspective. Health Services Research. 2002; 37(2): 417-431

13. Etiology of Overuse “High variation in patterns of [surgical] treatment for breast cancer is evidence of failure to involve women about the treatment they prefer.” 1 1. Wennberg JE. 13th annual Coggeshall lecture at the Univ of Chicago, April 2002. 2. Institute of Medicine, National Research Council 1999 “Persistent widespread regional variation in the performance of breast conserving surgery would appear to indicate that many women are not being offered a choice many women are not being offered a choice” 2

14. Research Questions What is the relationship between patient involvement and receipt of surgical therapy? What is the relationship between patient involvement and receipt of surgical therapy? Why do women receive mastectomy? Why do women receive mastectomy?

15. Research Design Retrospective survey of patients recently diagnosed with breast cancer and reported to Detroit and Los Angeles SEER in 2002 Retrospective survey of patients recently diagnosed with breast cancer and reported to Detroit and Los Angeles SEER in 2002 Over-sampled DCIS and African American women Over-sampled DCIS and African American women Surveyed attending surgeons Surveyed attending surgeons Medical record and survey data combined Medical record and survey data combined

16. Response Rate Patients 2,384 selected 1844 responded 77.3% response rate Surgeons 456 identified 365 responded 80.0% response rate

17. Patient Sample Characteristics (N=1835) Figures are weighted to account for differential selection by stage, ethnicity, and non-response

18. Who made the surgery decision? Percent Doctor 10% Doctor, considered patient opinion 13% Made decision together 37% Patient, considered doctor opinion 40% Patient 3%

19. Receipt of Mastectomy by Decision Control and Ethnicity % Women with AJCC stage 0,1 or 2. Proportions adjusted for age, marital status, education, number of surgeons visited, medical comorbidity, tumor behavior, tumor size, histological grade, and SEER site. Interaction between racial groups and decision control groups is significant (Wald test 14.1, p=.007) Katz et al. J Clin Onc. 2005;23(4):5526-5533; Katz et al. J Clin Onc.2005;23(13):3001-3007.

20. Level Of Patient Concern By Dimension Women with AJCC stage 0,1 or 2 and who perceived choice between surgical treatment alternatives (N=1079).

21. Receipt Of Mastectomy By Level of Patient Concern % Among women with AJCC stage 0,1 or 2 and who perceived choice between surgical treatment alternatives (N=1079), adjusted by age, education, ethnicity, medical comorbidity, tumor behavior, tumor size, histological grade.. p<.001 p=.231 p=.014

22. New Studies 3800 patients with breast cancer diagnosed in 2006 will be accrued in Detroit and Los Angeles metro areas 3800 patients with breast cancer diagnosed in 2006 will be accrued in Detroit and Los Angeles metro areas Patients will be surveyed shortly after diagnosis Patients will be surveyed shortly after diagnosis SEER data will be merged to survey data SEER data will be merged to survey data All attending surgeons and oncologists will be surveyed All attending surgeons and oncologists will be surveyed Preliminary findings on LA sample presented Preliminary findings on LA sample presented

23. ProcedureN % BCS691 62.5 62.5 Mastectomy Initial recommendation Initial recommendation Patient choice Patient choice Failed initial BCS Failed initial BCS221 90 9010420.0 8.1 8.1 9.4 9.4 Total1106100 Surgery Option Los Angeles Preliminary Sample n=1106

24. Surgeon Recommendations First surgeon recommended Mast (n=266) BCS (n=654) p value Patient sought second opinion 27%16%<.001 2 nd surgeon concordant with 1 st surgeon 74%72%NS

25. Outcome of Attempted BCS

26. Limitations Preliminary sample Preliminary sample Later stage disease could not be excluded Later stage disease could not be excluded Findings unadjusted for over-sampling of selected racial/ethnic groups Findings unadjusted for over-sampling of selected racial/ethnic groups Patient self-report of treatment experience Patient self-report of treatment experience

27. Conclusions Receipt of mastectomy is largely the result of clinical contraindications to BCS and, to a lesser extent, patient preferences Receipt of mastectomy is largely the result of clinical contraindications to BCS and, to a lesser extent, patient preferences Infrequent discordance in surgical opinions about the need for mastectomy and low rates of mastectomy after BCS suggest that surgeons have accepted BCS and standard contra-indications to the procedure Infrequent discordance in surgical opinions about the need for mastectomy and low rates of mastectomy after BCS suggest that surgeons have accepted BCS and standard contra-indications to the procedure Initiatives to improve surgical treatment decision- making should focus on patient perspectives about risks and benefits of surgical options and predictors of failure of re-excision after initial attempts at BCS Initiatives to improve surgical treatment decision- making should focus on patient perspectives about risks and benefits of surgical options and predictors of failure of re-excision after initial attempts at BCS

28. Latina Patient Perspectives about Informed Decision Making for Surgical Breast Cancer Treatment Sarah T. Hawley, PhD, MPH

29. Research Questions What is the degree to which Latina women (Spanish and English speaking) with breast cancer participate in informed treatment decision making relative to Caucasian women? What is the degree to which Latina women (Spanish and English speaking) with breast cancer participate in informed treatment decision making relative to Caucasian women? What factors are associated with achieving the desired amount of involvement in and informed decision making for breast cancer treatment among racial/ethnic minority women with breast cancer? What factors are associated with achieving the desired amount of involvement in and informed decision making for breast cancer treatment among racial/ethnic minority women with breast cancer?

30. Decision Outcomes Involvement in the decision from Control Preferences Scale (surgeon-based, shared, patient based) Involvement in the decision from Control Preferences Scale (surgeon-based, shared, patient based) Concordance between actual-preferred amount of involvement (too little, just right, too much) Concordance between actual-preferred amount of involvement (too little, just right, too much) Decision satisfaction 5-item scale Decision satisfaction 5-item scale Decision regret 5-item scale Decision regret 5-item scale

31. Decision Satisfaction Scale I am satisfied I was adequately informed about the issues important to the decision about what kind of surgery to have I am satisfied I was adequately informed about the issues important to the decision about what kind of surgery to have I am satisfied with the decision about what kind of surgery to have I am satisfied with the decision about what kind of surgery to have I wish I had given more consideration to other surgical treatment options I wish I had given more consideration to other surgical treatment options I would have liked more information when the decision about surgery was made I would have liked more information when the decision about surgery was made I would like to have participated more in making the decision about what kind of surgery to have I would like to have participated more in making the decision about what kind of surgery to have

32. Decision Regret Scale If I had to do it over… I would make a different decision about what type of surgery to have I would make a different decision about what type of surgery to have I would choose a different surgeon for my surgery I would choose a different surgeon for my surgery I would take more time to make decisions about my treatment I would take more time to make decisions about my treatment I would consult more doctors about my treatment before making a decision I would consult more doctors about my treatment before making a decision I would do everything the same I would do everything the same

33. Patient Variables Race/ethnicity (Latina-Spanish speaking, Latina- English speaking, African American, Caucasian) Race/ethnicity (Latina-Spanish speaking, Latina- English speaking, African American, Caucasian) Education (less than high school, high school graduate, some college, college graduate or more) Education (less than high school, high school graduate, some college, college graduate or more) Age Age

34. Analysis Descriptive and bivariate associations between independent variables and involvement and decision outcomes Descriptive and bivariate associations between independent variables and involvement and decision outcomes Multinomial and logistic regression of involvement and discordance to confirm results of bivariate analyses Multinomial and logistic regression of involvement and discordance to confirm results of bivariate analyses

35. Patient Characteristics Mean age57 yrs (25-81) Race/ethnicity (%) Latina-SP25 Latina-E19 African American25 Caucasian28 Education (%) Less than high school25 High school graduate18 Some college33 College graduate 23

36. Decision Involvement Percentages adjusted for age and education

37. Discordance Between Actual and Preferred Involvement Adjusted percentages controlling for age and education; P<0.001

38. Decision Dissatisfaction Adjusted percentages controlling for age and education; P<0.001

39. Decision Regret Adjusted percentages controlling for age and education; P<0.001

40. Conclusions Latina women, especially those who prefer Spanish, are particularly vulnerable to poor breast cancer treatment decisions Latina women, especially those who prefer Spanish, are particularly vulnerable to poor breast cancer treatment decisions These disparities may be related to insufficient match in decision involvement, lower satisfaction with the decision process, and more decision regret These disparities may be related to insufficient match in decision involvement, lower satisfaction with the decision process, and more decision regret

41. Limitations Preliminary data Preliminary data Self-reported information Self-reported information Need to tease apart the relationship between race/ethnicity, language and acculturation Need to tease apart the relationship between race/ethnicity, language and acculturation

42. Implications Large racial/ethnic disparities in decision outcomes raise concerns about the quality of treatment decisions and care Large racial/ethnic disparities in decision outcomes raise concerns about the quality of treatment decisions and care There is a need to explore the mechanisms underlying these racial/ethnic disparities; for example health literacy, language and acculturation There is a need to explore the mechanisms underlying these racial/ethnic disparities; for example health literacy, language and acculturation