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26 - Data for cancer outcomes research: identifying and strengthening the empirical base

Published online by Cambridge University Press:  18 December 2009

By
Carolyn C. Gotay Ph.D.  and
Joseph Lipscomb Ph.D.
Edited by
Joseph Lipscomb ,
Carolyn C. Gotay  and
Claire Snyder
Carolyn C. Gotay Ph.D.
Affiliation:
Professor Cancer Research Center of Hawai'i, Honolulu, HI
Joseph Lipscomb Ph.D.
Affiliation:
Professor of Public Health National Cancer Institute, Bethesda, MD
Joseph Lipscomb
Affiliation:
National Cancer Institute, Bethesda, Maryland
Carolyn C. Gotay
Affiliation:
Cancer Research Center, Hawaii
Claire Snyder
Affiliation:
National Cancer Institute, Bethesda, Maryland
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Summary

Introduction

It is clear from earlier chapters that data for measuring, interpreting, explaining, and predicting cancer outcomes are currently available from a variety of sources. Cancer registries, medical records, administrative claims data, and patient and provider surveys yield, individually or in concert, information about a range of outcomes that matter to decision makers. These outcomes include not only survival, disease-free survival, tumor progression, and a host of other biomedical endpoints, but important patient-reported outcomes that are the focus of this book — health-related quality of life (HRQOL), patient perceptions of and satisfaction with care, and the economic burden of cancer and its treatment. Moreover, these same data sources also yield, with varying degrees of completeness, information on a variety of factors associated with variations in cancer outcomes. These include socioeconomic and other demographic descriptors, comorbidities and other clinical determinants, and provider and health system variables.

At the moment, no single database or system provides sufficiently comprehensive information on the full range of variables required for cancer outcomes research. Rather, what we have is a substantial number of public agencies and private organizations doing an increasingly good job at collecting important pieces, components, and parts of the data required for the cancer outcomes research agenda of today and tomorrow.

In the immediate future and beyond, new prevention, diagnostic, treatment, and palliative modalities will continue to emerge. Public and private payment systems will continue to evolve, as pressures for both cost containment and quality assurance grow.

Type
Chapter
Information
Outcomes Assessment in Cancer
Measures, Methods and Applications
 , pp. 522 - 549
Publisher: Cambridge University Press
Print publication year: 2004

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References

Sloan, this volume, Chapter 18
O'Brien, this volume, Chapter 25
Reise, this volume, Chapter 21
National Cancer Policy Board, Institute of Medicine (1999). Ensuring Quality Cancer Care, ed. M. Hewitt, J. V. Simone. Washington, DC: National Academy Press
National Cancer Policy Board, Institute of Medicine (2000). Enhancing Data Systems to Improve the Quality of Cancer Care, ed. M. Hewitt, J. V. Simone. Washington, DC: National Academy Press
National Cancer Institute. “Surveillance, Epidemiology, and End Results (SEER) Program.” Available at http://seer.cancer.gov. Last accessed September 9, 2004
Centers for Disease Control and Prevention. “National Program of Cancer Registries.” Available at http://www.cdc.gov/cancer/npcr/. Last accessed September 9, 2004
Commission on Cancer, American College of Surgeons. “National Cancer Data Base (NCDB).” Available at http://www.facs.org/dept/cancer/ncdb/. Last accessed September 9, 2004
National Cancer Institute. “SEER Pattern of Care/Quality of Care Studies.” Available at http://www.healthservices.cancer.gov/surveys/poc. Last accessed September 9, 2004
National Cancer Institute. “Rapid Response Surveillance Studies.” Available at http://outcomes.cancer.gov/methods/quality/seer-rrss.html. Last accessed September 9, 2004
Potosky, A. L., Harlan, L. C., Stanford, J. L.et al. (1999). Prostate cancer practice patterns and quality of life: the Prostate Cancer Outcomes StudyJournal of the National Cancer Institute 91(20):1719–24CrossRefGoogle ScholarPubMed
National Cancer Institute. “SEER-Medicare Linked Data Base.” Available at http://healthservices.cancer.gov/seermedicare/. Last accessed September 9, 2004
Edge, S. B., Fritz, A., Clutter, G. G.et al. (1999). A unified cancer stage collection system: preliminary report from the Collaborative Stage Task Force/American Joint Committee on CancerJournal of Registry Management 26(2):57–61Google Scholar
Ayanian, J. Z., Zaslavsky, A. M., Fuchs, C. F.et al. (2003). Use of adjuvant chemotherapy and radiation therapy for colorectal cancer in a population-based cohortJournal of Clinical Oncology 21:1293–300CrossRefGoogle Scholar
Hillner, B., McDonald, K., Desch, C.et al. (1998). A comparison of patterns of care of nonsmall cell lung carcinoma patients in a younger and Medigap commercially insured cohortCancer 83(9):1930–73.0.CO;2-X>CrossRefGoogle Scholar
Surveillance Implementation Group (1999). Cancer Surveillance Research Implementation Plan. National Cancer Institute, National Institutes of Health. Available at http://dccps.nci.nih.gov/DCCPS/SIG. Last accessed September 9, 2004
National Cancer Institute. “Breast and Ovarian Cancer Family Registries.” Available at http://epi.grants.cancer.gov/BCFR/index.html. Last accessed on April 26, 2003
National Cancer Institute. “Colon Cancer Family Registries.” Available at http://epi.grants.cancer.gov/CCFR/index.html. Last accessed on April 26, 2003
Gilda Radner Familial Ovarian Cancer Registry (located at Roswell Park Cancer Institute, Buffalo, NY). Available at http://www.ovariancancer.com/. Last accessed on April 26, 2003
Ballard-Barbash, R., Taplin, S. H., Yankaskas, B. C.et al. (1997). Breast Cancer Surveillance Consortium: a national mammography screening and outcomes databaseAmerican Journal of Radiology 169:1001–8Google ScholarPubMed
Bach, P. B., Cramer, L. D., Warren, J. L.et al. (1999). Racial differences in the treatment of early-stage lung cancerNew England Journal of Medicine 341(16):1198–205CrossRefGoogle ScholarPubMed
Schrag, D., Cramer, L. D., Bach, P. B.et al. (2001). Age and adjuvant chemotherapy use after surgery for stage II colon cancerJournal of the National Cancer Institute 93(11):850–7CrossRefGoogle Scholar
Warren, J. L., Feuer, E., Potosky, A. L.et al. (1999). Use of Medicare hospital and physician data to assess breast cancer incidenceMedical Care 37(5):445–56CrossRefGoogle ScholarPubMed
Cooper, G. S., Yuan, Z., Stange, K. C.et al. (1999). The utility of Medicare claims data for measuring cancer stageMedical Care 37(7):706–11CrossRefGoogle ScholarPubMed
Bradley, C. J., Given, C. W., Robert, C. (2002). Race, socioeconomic status, and breast cancer treatment and survivalJournal of the National Cancer Institute 94(7):490–6CrossRefGoogle ScholarPubMed
McKee, M. D., Cropp, M. D., Hyland, A.et al. (2002). Provider case volume and outcome in the evaluation and treatment of patients with mammogram-detected breast carcinomaCancer 95:704–12CrossRefGoogle ScholarPubMed
Doebbeling, B. N., Wyant, D. K., McCoy, K. D.et al. (1999). Linked insurance-tumor registry database for health services researchMedical Care 37(11):1105–15CrossRefGoogle ScholarPubMed
CyberAtlas Staff. “U.S. doctors behind in adoption of electronic records.” Harris Interactive. Available at http://cyberatlas.internet.com/markets/healthcare/article/0,10110_897031,00.html. Last accessed September 9, 2004
U.S. Department of Veterans Affairs. “Information about VIReC (VA Information Resource Center).” Available at http://www1.va.gov/hsrd/fr/loi/virec.htm. Last accessed September 9, 2004
Etzioni, R., Urban, N., Baker, M. (1996). Estimating the costs attributable to a disease with application to ovarian cancerJournal of Clinical Epidemiology 49(1):95–103CrossRefGoogle ScholarPubMed
Donaldson, M. S. (2004). Taking stock of health-related quality-of-life measurement in oncology practice in the United States.Journal of the National Cancer Institute Monograph 33:155–67CrossRefGoogle Scholar
Rehm, S., Kraft, S. (2001). Electronic medical records: the FPM vendor surveyFamily Practice Management 8:45–54Google ScholarPubMed
Centers for Medicare & Medicaid Services (DHHS). “MedQuest.” Available at http://cms.hhs.gov/medquest. Last accessed September 9, 2004
Ayanian, J. Z., Chrischilles, E. A., Wallace, R. B.et al. (2004). Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium.Journal of Clinical Oncology 22:2992–6CrossRefGoogle ScholarPubMed
Board on Health Care Services, Institute of Medicine (2003). Key Capabilities of an Electronic Health Record System, Board on Health Care Services. Washington, DC: National Academy Press
National Cancer Institute. “What is the Health Interview Survey?”. Available at http://appliedresearch.cancer.gov/surveys/nhis/ Last accessed on September 4, 2004
Freedman, A. N., Graubard, B. I., Rao, S. R.et al. (2003). Estimates of the number of U.S. women who could benefit from Tamoxifen for breast cancer chemopreventionJournal of the National Cancer Institute 95:526–32CrossRefGoogle ScholarPubMed
National Cancer Institute. “What is the California Health Interview Survey?” Available at http:/appliedresearch.cancer.gov/surveys/chis/. Last accessed September 9, 2004
Centers for Disease Control and Prevention. “Behavioral Risk Factor Surveillance System.” Available at http://www.cdc.gov/brfss/. Last accessed on September 27, 2004
National Center for Health Statistics. “National Health and Nutrition Examination.” Available at http://www.cdc.gov/nchs/nhanes/htm. Last accessed September 9, 2004
National Cancer Institute. “What Is the TUS-CPS?” Available at http://riskfactor.cancer.gov/studies/tus-cps/. Last accessed on September 9, 2004
Centers for Medicare & Medicaid Services. “Medicare Health Outcomes Survey.” Available at http://cms.hhs.gov/surveys/hos/. Last accessed September 9, 2004
Baker, F., Haffer, S. C., Denniston, M. (2003). Health-related quality of life of cancer and noncancer patients in Medicare managed careCancer 97:674–81CrossRefGoogle ScholarPubMed
Goldstein, E., Cleary, P. D., Langwell, K. M.et al. (2001). Medicare managed care CAHPS®: a tool for performance improvementHealth Care Financing Review 22(3):101–7Google ScholarPubMed
Darby, this volume, Chapter 14
Ganz, Goodwin, this volume, Chapter 5
Moinpour, Provenzale, this volume, Chapter 8
Earle, Weeks, this volume, Chapter 7
Litwin, Talcott, this volume, Chapter 6
Zebrack, Cella, this volume, Chapter 11
Ferrell, this volume, Chapter 12
Snyder, this volume, Chapter 16
Feeny, this volume, Chapter 4
Erickson, this volume, Chapter 3
Gustafson, this volume, Chapter 15
National Cancer Institute. “What is the Health, Eating, Activity, and Lifestyle (HEAL) Study?” Available at http://appliedresearch.cancer.gov/surveys/heal. Last accessed on September 9, 2004
American Cancer Society. Research Program and Funding — Behavioral Research Center. Available at http://www.cancer.org/docroot/RES/RES_0.asp. Last accessed on September 27, 2004
National Cancer Institute. A pilot evaluation of the Consumer Assessment of Health Plans instrument in a cancer population. Available at http://outcomes.cancer.gov/methods/quality/seer_rrss.html. Last accessed on September 13, 2004
Center for Demographic Studies (Duke University). “The National Long Term Care Survey (NLTCS).” Available at http://www.nltcs.eds.duke.edu/index.htm. Last accessed September 9, 2004
National Cancer Institute. “What is the Physician Survey on Cancer Susceptibility Testing?” Available at http://riskfactor.cancer.gov/studies/physician/. Last accessed September 9, 2004
National Cancer Institute. “National Survey of Colorectal Cancer Screening Practices.” Available at http://healthservices.cancer.gov/surveys/colorectal/. Last accessed September 9, 2004
Sickles, E. A., Wolverton, D. E., Dee, K. E. (2002). Performance parameters for screening and diagnostic mammography: specialist and general radiologistsRadiology 224:861–9CrossRefGoogle ScholarPubMed
Brown, M. L., Fintor, L. (1995). The use of mobile units to deliver screening mammography services in the United States: results from the National Survey of Mammography FacilitiesRadiology 195:529–32CrossRefGoogle Scholar
National Center for Health Statistics. “National Hospital Discharge Survey Description.” Available at http://www.cdc.gov/nchs/about/major/hdasd/nhdsdes.htm. Last accessed September 9, 2004
Agency for Healthcare Research and Quality. “Healthcare Cost and Utilization Project (HCUP): 1988–2000: a Federal-State Industry Partnership in Health Data.” Available at http://www.ahrq.gov/data/hcup/. Last accessed September 9, 2004
Quality Resource Systems, Inc. “The Area Resource File System” (maintained under contract from the Bureau of Health Professions, U.S. Health Resources and Services Administration). Available at http://www.arfsys.com/. Last accessed September 9, 2004
National Center for Health Statistics. “What is the National Ambulatory Medical Care Survey?” Available at http://www.cdc.gov/namcs/. Last accessed September 9, 2004
Agency for Healthcare Research and Quality. “Medical Expenditure Panel Survey (MEPS).” Available at http://www.meps.ahrq.gov. Last accessed September 9, 2004
Centers for Medicare & Medicaid Services. “Medicare Current Beneficiary Survey: Overview.” Available at http://www.cms.hhs.gov/MCBS/default.asp. Last accessed September 9, 2004
Thorpe, K. E., Howard, D. (2003). Health insurance and spending among cancer patients. Health Affairs. Available at http://www.healthaffairs.org/WebExclusives.php and also summarized in volume 22, number 3 (May/June):12CrossRef
Centers for Medicare & Medicaid Services. “The Minimum Data Set 2.0.” Information Site. Available at http://www.cms.hhs.gov/medicaid/mds20/. Last accessed September 9, 2004
Centers for Medicare & Medicaid Services. “OASIS Overview.” Available at http://www.cms.hhs.gov/oasis/hho.view.asp. Last accessed on September 9, 2004
Institute for Social Research, University of Michigan. “Study of Assets and Health Dynamics Among the Oldest Old (AHEAD). Available at http://hrsonline.isr.umich.edu/. Last accessed September 9, 2004
Soldo, B. J., Hurd, M. D., Rodgers, W. L.et al. (1997). Asset and Health Dynamics among the oldest old: an overview of the AHEAD StudyJournal of Gerontology B: Psychological Science and Social Science 52B:1–20CrossRefGoogle Scholar
Hayman, J. A., Langa, K. M., Kabeto, M. U.et al. (2001). Estimating the cost of informal caregiving for elderly patients with cancerJournal of Clinical Oncology 19:3219–25CrossRefGoogle ScholarPubMed
Hornbrook, this volume, Chapter 24
Willis, Reeve, Barofsky, this volume, Invited Paper C
Selby, J. V. (1997). Linking automated databases for research in managed care settingsAnnals of Internal Medicine 127:719–24CrossRefGoogle ScholarPubMed
Wagner, E. H., Thompson, R. S. (1988). Cancer prevention and HMOsCancer Investigation 6(4):453–9CrossRefGoogle ScholarPubMed
Hartmann, L. C., Schaid, D. J., Woods, J. E.et al. (1999). Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancerNew England Journal of Medicine 340(2):77–84CrossRefGoogle ScholarPubMed
U.S. Indian Health Service. “EHR Overview, Site Planning and Schedule.” Available at http://www.ihs.gov/generalweb/webapps/ehr/save/index.asp. Last accessed September 9, 2004
U.S. Department of Veterans Affairs. “Quality Enhancement Research Initiative,” available at http://www1.va.hsrd/research/queri/ and “Colorectal Cancer Quality Enhancement Research Initiative,” http://www.hsrd.minneapolis.med.va.gov/CRC/CRCHome.asp. Last accessed on July 5, 2003
Schneider, E. C., Epstein, A. M., Malin, J. L.et al. (2004). Developing a system to assess the quality of cancer care: ASCO's National Initiative on Cancer Care Quality.Journal of Clinical Oncology 22:2985–91CrossRefGoogle ScholarPubMed
National Cancer Institute. “Breast Cancer Surveillance Consortium.” Available at http://breastscreening.cancer.gov. Last accessed on September 9, 2004
National Cancer Institute. “HMO Cancer Research Network.” Available at http://crn.cancer.gov. Last accessed September 9, 2004
National Comprehensive Cancer Network. “Oncology Outcomes Database.” Available at http://www.nccn.org/professionals/outcomes_database.asp. Last accessed September 9, 2004
National Cancer Institute. “Cancer Therapy Evaluation Program.” Available at http://CTEP.cancer.gov. Last accessed September 9, 2004
National Cancer Institute. “Community Clinical Oncology Program.” Available at http://www3.cancer.gov/prevention/ccop/. Last accessed September 9, 2004
Day, R., Ganz, P. A., Costantino, J. P.et al. (1999). Health-related quality of life and tamoxifen in breast cancer prevention: a report from the National Surgical Adjuvant Breast and Bowel Project P-1 StudyJournal of Clinical Oncology 17(9):2659–69CrossRefGoogle ScholarPubMed
Schink, J. C., Weller, E., Harris, L. S.et al. (2001). Outpatient taxol and carboplatin chemotherapy for suboptimally debulked epithelial carcinoma of the ovary results in improved quality of life: an Eastern Cooperative Group phase II study (E2E93)Cancer Journal 7(2):155–64Google Scholar
Cella, D., Eton, D. T., Fairclough, D. L.et al. (2002). What is clinically meaningful change (CMC) on the Functional Assessment of Cancer Therapy — Lung (FACT-L) questionnaire? An analysis of data from ECOG 5592Journal of Clinical Epidemiology 55:286–95CrossRefGoogle ScholarPubMed
Wenzel, L. B., Donnelly, J. P., Fowler, J. M.et al. (2002). Resilience, reflection, and residual stress in ovarian cancer survivorship: a Gynecologic Oncology Group studyPsycho-Oncology 11:142–53CrossRefGoogle ScholarPubMed
Gotay, C. C., Moinpour, C. M., Moody-Thomas, S.et al. (2000). Behavioral science research in the cooperative group setting: the Southwest Oncology Group experienceJournal of the National Cancer Institute 92:1381–7CrossRefGoogle ScholarPubMed
Hutchins, L. F., Unger, J. M., Crowley, J. J.et al. (1999). Underrepresentation of patients 65 years of age or older in cancer-treatment trialsNew England Journal of Medicine 341(27):2061–7CrossRefGoogle ScholarPubMed
National Cancer Institute. “Policies and Guidelines Relating to the Cancer-Center Support Grant.” Available at http://www3.cancer.gov/cancercenters/ccsg_comp_pt1_1to2.html. Last accessed September 9, 2004
National Cancer Institute. “The Nation's Investment in Cancer Research: A Plan and Budget Proposal for Fiscal Year 2005.” Available at http://plan.cancer.gov. Last accessed on September 13, 2004
Agency for Healthcare Research and Quality. “Primary Care Practice-Based Research Networks: Fact Sheet.” Available at http://www.ahrq.gov/research/pbrnfact.htm. Last accessed on September 9, 2004
Agency for Healthcare Research and Quality. “Integrated Delivery System Research Network (IDSRN): Field Partnerships to Conduct and Use Research.” Available at http://www.ahrq.gov/research/dsrn.htm. Last accessed September 9, 2004
U.S. Office of Civil Rights. “Office for Civil Rights — HIPAA. Medical Privacy — National Standards to Protect the Privacy of Personal Health Information.” Available at http://www.hhs.gov/ocr/hipaa. Last accessed on September 9, 2004
National Institutes of Health. “Protecting Personal Health Information in Research: Understanding the HIPAA Privacy Rule.” Available at http://privacyruleandresearch.nih.gov. Last accessed on September 9, 2004

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