NAACCR 2007 Conference Determining Quality of Cancer Care Using Cancer Registry Data

1. NAACCR 2007 Conference Determining Quality of Cancer Care Using Cancer Registry Data Patterns of Care Analysis Using SEER-Medicare Data Nancy Baxter St Michael’s Hospital, University of Toronto

2. Financial Relationships None to Disclose

3. Overview • Patterns of care - why do we care? • Use of SEER-Medicare data • Examples • Advantages and disadvantages • Alternatives for patterns of care • Examples • Advantages and disadvantages • Impact and Interpretation • Quality of care?

4. Patterns of Care • Provides a snap shot to evaluate practice • Determine need for knowledge translation interventions and quality improvement strategies • Opportunity for feedback • Evaluate trends over time • Identify important variations • Regional variations in care • Variations in care based on patient factors • Variations in care based on provider factors • Creates an environment of “watchful concern”

5. SEER-Medicare Data • Tremendously rich data for patterns of care studies • Quality and completeness of SEER data in terms of case identification and staging • Medicare Data • Able to enrich SEER data wrt first course of treatment • Provides information on long-term care of cancer patients – can evaluate patterns of care for surveillance, screening of survivors etc.

6. Snap Shot in Time Variations in Reconstruction After Radical Cystectomy Gore JL Cancer 2006; 107:729-37

7. Premise • Removal of the bladder for bladder ca is highly morbid • Reconstruction with neobladder is thought to improve quality of life above standard ileoconduit • Patterns of care in this area unknown • Series in expert centers unlikely to reflect care in the population

8. Methods • Patients in SEER areas with a bladder malignancy (identified through SEER) diagnosed 1992 through 1999 • Underwent radical cystectomy by 2000 as defined by ICD-9 and CPT codes for radical cystectomy • Method of reconstruction determined using ICD-9 and CPT codes • Also evaluated patient and provider factors and the influence of these factors on choice of reconstruction

9. Results • 3611 patients with bladder cancer identified who underwent cystectomy • 20% had neobladder • 80% had ileoconduit • Age, sex, race, income, and education all important determinants of reconstruction • Provider factors important

10. Conclusions • Majority of older patients with bladder cancer do not receive what is considered optimal treatment • Patient and provider factors associated with type of bladder reconstruction, many that should have no impact on eligibility for a neobladder • Regionalization might promote increased use of neobladder reconstruction

11. Time Trends Radiation Therapy After Mastectomy Between 1991 and 1999 in Elderly Women: Response to Clinical Trial Information Punglia et al JCO 2006; 24:3474-82

12. Premise • Post-mastectomy irradiation recommended for women at high risk of recurrence • Did care change in response to presentation / publication of evidence? • 1994 – abstract presented from Danish study – benefit in premenopausal but not significant in postmenopausal • 1997 – 2 RCT’s published (Danish and British Columbia) demonstrating benefit in premenopausal • 1999 – Danish study reported for postmenopausal demonstrating benefit

13. Methods • Used SEER-Medicare data • Women with Stage I and II breast cancer diagnosed 1991 – 1999 who underwent mastectomy as defined by SEER or Medicare data • ge 65, continuously enrolled in Medicare Part A and B, not enrolled in an HMO

14. Results • 19,699 women identified, 11% underwent irradiation

15. Multivariate Analysis • After adjusting for covariates, postmastectomy irradiation increased over time • Odds of RT in 1999 (vs 1991) = 1.8 (95% CI 1.4-2.2) • Also found significant differences in rates depending on type of institution and region of the country

16. Variations in Care Effect of Distance to Radiation Treatment Facility on the Use of Radiation after Mastectomy in Elderly Women Punglia et al, Int J Radiat Oncol Biol Phys 2006; 66:56-63

17. Premise • Many small communities lack radiation facilities • Radiation treatment requires daily therapy • Lack of access to transportation may be a critical factor in delivery of irradiation • May be a particular issue in the elderly

18. Methods • Used SEER-Medicare data • Women with Stage I and II breast cancer diagnosed 1991 – 1999 who underwent mastectomy as defined by SEER or Medicare data • ge 65, continuously enrolled in Medicare Part A and B, not enrolled in an HMO • Determined latitude and longitude of 1,197 facilities offering radiation • Determined latitude and longitude of patient residence based on Zip code

19. Results • 19,787 women identified, 11% had irradiation • Median distance to RT center = 4.8 miles (IQR = 2.7-10.8) • Distance from facility associated with receipt of RT in multivariate analysis

20. Interpretation • RT was associated with distance from center • However only decreased with > 25 miles away • Only 13% of patients lived this distance from center • SEER regions more urban than general US population 1 • This effect was primarily for node negative patients – when evaluated separately, no effect of distance for node positive patients most likely to benefit Warren Med Care 2002; 40:IV 3-18

21. SEER-Medicare Data • Powerful dataset to evaluate patterns of care BUT • Major limitations to these data for evaluation of patterns of care • ?population-based • Does not include younger individuals • Most studies exclude patients not continuously enrolled in Part A and Part B • Most studies excluded anyone enrolled in an Health Maintenance Organization • Obviously there are circumstances where care may differ in younger individuals, those in HMOs, or those who do not have continuous enrollment in Part A and B

22. Impact of Age Restriction Treatment of DCIS Age Restricted Gold Med Care 2004; 42:267-75 No Age Restriction Baxter JNCI 2004; 96:443-8

23. Age is a Major Predictor of RT

24. Exclusion of Patients in HMO • Diagnosis and treatment may vary depending on type of health care coverage • Differences of how patients are selected for coverage • Differences in what health plans offer to their patients • Prostate Cancer Treatment and 10-year Survival Among Group/Staff HMO and fee-for-service Medicare Patients Potosky et al Health Serv Res 1999; 34:535-46

25. Compared care in 2 major HMO plans in SEER areas (San Francisco–Oakland / Seattle-Puget Sound) to care in patients enrolled in fee for service Medicare Exclusion of Patients in HMO

26. Exclusion of Patients in HMO • Impact likely differs for different cancers • Patterns of care likely differ for various HMO’s • Profit status • Regional variations • Wide regional range of HMO penetration

28. SEER Studies • For some studies the exclusivity of SEER-Medicare outweighs the benefits of the richness of the available data • Data also more rapidly and freely available • SEER-Medicare Patterns of care studies in the past have been potentially outdated when published • But SEER has very limited treatment information • No chemotherapy • No treatment information after first course of therapy • Limited patient information • No provider information • Geographically restricted

29. Alternatives? • Combine quality of SEER data with richness of Medicare data • Extend to all age groups, regions, and all forms of health care coverage • National Cancer Database • Joint program of the Commission on Cancer and the American Cancer Society • Nationwide outcomes database now covering 75% of all newly diagnosed cancers • Care in all states include • Currently not available for most researchers • Not population based • May not be all care received

30. Alternatives • Linkages of registry information to other datasets to enrich treatment, patient or provider data • The Impact of Highly Active Antiretroviral Therapy on Non-AIDS-Defining Cancers among Adults with AIDS • Hessol et al Am J Epidemiol 2007; 165:1143-53 • Linked San Francisco AIDS surveillance registry with the California Cancer Registry

31. Alternatives • Significantly higher cancer incidence than expected • Influence of anti-retroviral therapy on cancer mortality varied • Improved survival in lymphoma and lung cancer • Potentially worse survival in anal cancer • This method may be useful for specific populations • Lacks generalizability • May be quite difficult to perform the linkages • Limited treatment information

32. Canadian Data • Single payer system at the province level –detailed treatment information available on virtually all residents from administrative data • Drug information also available for individuals over age 65 in Ontario • Population-based cancer registries have been linked to admin data in many provinces • Lack of stage information greatly limits this work • Electronic capture of collaborative staging initiative in Ontario

33. Limitations of POC studies • Any dataset used for patterns of care studies lacks information essential to truly evaluate quality • Patient preferences • Important clinical factors • What was delivered vs what was recommended • POC studies are an important starting point –potential gaps identified • Causes can be explored in further research

35. Summary • SEER Medicare data is a rich source of information for patterns of care studies • Important to ask questions the data can answer • Understand the limitations of the data wrt truly evaluating quality • Consider other data sources for specific questions or populations