1. Use of CAHPS Surveys in Assessing the Patient- Centeredness of Cancer Care: NCI-AHRQ-CMS Collaborations Neeraj K. Arora, Ph.D. National Cancer Institute, Bethesda, MD Presented at AHRQ’s Annual Conference, Bethesda, MD, September 10, 2012

2. Why Patient-Centeredness?

3. Diagnosis Cancer!! When dxed with cancer, patients are faced with two important questions… – What is going to happen to me? (fear) – Will I get care from a health care system that will help me through this crisis? (support)

4. Patient-Centered Care Patient needs for ongoing support: Informational support: Understand information Decision-making support: Make informed decisions Emotional support: Adjust to/cope with illness Appraisal support: Deal with uncertainty Instrumental support: Navigate the health care system and coordinate care Self-management support: Take care of health outside the healthcare interaction

5. NCI Research Priority NCI supports research focused on facilitating the measurement, monitoring, and improvement of patient-centered cancer care with an aim to minimize the cancer burden An area of emphasis: communication between patients/family and members of health care delivery teams http://outcomes.cancer.gov/areas/pcc

6. NCI Collaborations Cancer CAHPS Survey: Collaboration with AHRQ (2009-2012) – Developed and pilot tested a cancer version of the CAHPS survey to measure patient experiences with care while receiving surgery, chemotherapy, or radiation – Contract led by Dr. Steven Garfinkel at the American Institutes for Research and Dr. Kathleen Yost at the Mayo Clinic SEER-CAHPS Data Linkage Project: Collaboration with CMS (2009-present)

7. National Cancer Institute (NCI) & SEER registries Centers for Medicare & Medicaid Services (CMS) With technical assistance from: RTI International Information Management Services, Inc. (IMS) RAND Corporation (Dr. Ron Hays), Harvard Medical School (Dr. Alan Zaslavsky) SEER-CAHPS Sponsors 7

8. SEER-CAHPS Data Sources SEER-CAHPS dataset includes the following: – Patient experiences data from CAHPS surveys fielded annually by CMS in all Medicare fee-for- service and Medicare Advantage plans from 1998- 2010 – Clinical data from NCI’s SEER registries for CAHPS respondents who had cancer while living in a SEER region (SEER covers ~28% of U.S. population) – Medicare claims data for CAHPS FFS respondents who had cancer and those without cancer who lived in a SEER region at the time of the survey

9. SEER-CAHPS Linkage: 1998-2010 Knowledge Synthesis Total Sample 3,383,661 Cancer Cases 166,379 Non-Cancer Cases 3,217,282

10. SEER-CAHPS Linkage: 1998-2010 Knowledge Synthesis Total Sample 3,383,661 Cancer Cases 166,379 Non-Cancer Cases 3,217,282 In SEER Region 630,231 Not in SEER 2,587,051

11. SEER-CAHPS Linkage: 1998-2010 Knowledge Synthesis Total Sample 3,383,661 Cancer Cases 166,379 Non-Cancer Cases 3,217,282 MA 113,209 FFS 53,170 In SEER Region 630,231 Not in SEER 2,587,051 MA 416,777 FFS 213,454 MA 1,577,471 FFS 1,009,580

12. Potential Research Questions Do perceptions of care differ among patients with versus without cancer? To what extent do cancer patients’ care experiences vary by racial and ethnic groups? –Do these disparities vary by FFS or Managed Care? How are patient experiences with care associated with utilization of care for beneficiaries in FFS plans?

13. Progress to Date Linkage between SEER-CAHPS-Medicare claims completed –Claims extracted for FFS beneficiaries for 2000- 2010 CAHPS survey data being cleaned Technical report on the data linkage activities and data codebook developed –Overview manuscript describing the SEER-CAHPS dataset drafted Work on initial empirical manuscripts begun