The Colorectal Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium has evaluated the care of newly diagnosed patients in multiple regions and health care delivery systems. This collaboration of 7 national sites, including the VA, represents a new model for studying cancer care: a large, distributed multidisciplinary team of investigators collecting shared data from patients, caregivers, physicians and medical records with a common set of rigorous protocols. This approach has enabled the Consortium to address a broader array of important clinical and policy questions than would typically be feasible at a single site. The study was presented to the public as "Share Thoughts on Care."
The 7 Primary Data Collection and Research sites (PDCRs) and their associated regions are:
1. University of Alabama at Birmingham: entire state of Alabama
2. Harvard Medical School/Northern California Cancer Center: 8 counties in northern California
3. University of Iowa: entire state of Iowa
4. University of California, Los Angeles/RAND: Los Angeles county
5. University of North Carolina at Chapel Hill: 22 counties in eastern and central North Carolina
6. Dana Farber Cancer Institute/Cancer Research Network: 5 HMOs in Seattle, Boston, Detroit, Portland (OR), and Honolulu
7. Department of Veterans Affairs: Coordinating site at Durham VA Medical Center; recruitment and enrollment sites at NY Harbor (Manhattan and Brooklyn), Baltimore, Durham, Nashville, Minneapolis, Indianapolis, Seattle, Chicago (Lakeside and Hines), Tucson, Biloxi, Temple, Atlanta, and Houston.
The two principal aims of this study were to: (a) determine how the characteristics and beliefs of cancer patients and providers and the characteristics of systems of organizations delivering cancer care influence treatment and outcomes across the continuum of care from diagnosis to recovery or death; (b) evaluate the effects of specific therapies on patients' survival, quality of life, and satisfaction with care (supplementing rather than substituting for data from randomized clinical trials).
The study used an observational study design. Share Thoughts on Care employed cancer registry rapid case ascertainment (RCA) in all 7 participating PDCR sites. The target population in five PDCRs consisted of all patients with newly diagnosed colorectal or lung cancer during the enrollment period for the study and who lived in the geographical area in which the site is located, without regard to the care setting. The target population in the remaining two PDCRs, the VA and DFCI/CRN, consisted of all patients diagnosed with colorectal or lung cancer during the enrollment period for the study who received their care from one of the 15 participating VA sites or from the 5 HMOs comprising the CRN. Data were collected on the care of newly diagnosed colorectal and lung cancer patients from 3 months prior to diagnosis through 15 months post-diagnosis. Primary data sources were patient (or proxy) baseline and follow-up surveys, medical records abstraction, provider surveys, and a caregivers survey. These data were pooled with cancer registry data, administrative data, and publicly available datasets. The main methods of analysis were: (a) standard methods for estimating the probability of a binary outcomes or a population mean to estimate population parameters with confidence intervals; (b) regression models for estimating the association of one or more patient-level, physician-level, or health care system feature with an outcome of interest.
Between September 2003 and December 2005, the CanCORS Share Thoughts on Care study enrolled 5,150 participants with lung cancer and 4,911 with colorectal cancer, and surveyed 7,874 of their providers and 1,630 of their caregivers. Median age of participants was 67 years, 57% were male, 68% were white; and 75% were educated at a high school level and above. Significant findings include:
1. Of stage III colon cancer patients who underwent curative surgery, older patients were somewhat more likely to die within 60 days of surgery (7% vs. 1%) and somewhat less likely to be referred to an oncologist (92% vs. 97%). Yet even among patients who survived and consulted with an oncologist, adjuvant chemotherapy was used much less often for patients 75 and older than for younger patients (56% vs. 87-94%).
2. Since 2004 three new targeted therapies have been approved for use in patients with metastatic colorectal cancer. VA investigators focused on bevacizumab (Avastin). During the first two years after bevacizumab was approved by the FDA, 29% of patients received it, including 21% who received it as 1st-line therapy. Female gender, younger age, and patients with increased comorbidity were significantly more likely to receive this drug as 1st-line therapy.
3. An analysis of the outcomes of chemotherapy for 1,200 patients with stage IIIB or IV lung cancer found that patients age 75 and older were much less likely than younger patients to receive chemotherapy. Elderly patients who received chemotherapy were in much better health before treatment than those who did not, reflecting selection of the fittest older patients for treatment.
4. Overall, patients reported that 39% of their treatment decisions were patient controlled, 18% were physician controlled, and 44% were shared by patients and physicians. Decisions about radiotherapy were more likely to be physician controlled than decisions about surgery or chemotherapy, whereas decisions about chemotherapy were more likely to be patient controlled. Decisions with strong supporting evidence (e.g. chemotherapy for stage III colon cancer) were most likely to shared, while decisions with uncertain benefits (e.g. chemotherapy for stage II colon cancer) were most likely to be patient controlled and those with no evidence of benefit were most likely to be physician controlled.
(5) Only 5.5% of nearly 10,000 patients had enrolled in a clinical trial. In adjusted analyses, clinical trial enrollment was significantly less common among older patients, women, racial and ethnic minorities, and those with early-stage disease.
This study will promote the translation of research discoveries and innovations into patient care and systems improvements in order to reduce the incidence, late detection, suffering and mortality from colon, rectal and lung cancers among veterans. For the VA in particular, the work done within CanCORS is improving our ability to target areas for quality improvement and understanding factors that contribute to gaps in quality. Moreover, CanCORS data will enable us to better focus interventions that will improve the outcomes of the cancer care that we deliver to our veterans.
- Phelan SM, Griffin JM, Jackson GL, Zafar SY, Hellerstedt W, Stahre M, Nelson D, Zullig LL, Burgess DJ, van Ryn M. Stigma, perceived blame, self-blame, and depressive symptoms in men with colorectal cancer. Psycho-oncology. 2013 Jan 1; 22(1):65-73.
- Martin MY, Sanders S, Griffin JM, Oster RA, Ritchie C, Phelan SM, Atienza AA, Kahn K, van Ryn M. Racial variation in the cancer caregiving experience: a multisite study of colorectal and lung cancer caregivers. Cancer nursing. 2012 Jul 1; 35(4):249-56.
- Zullig LL, Jackson GL, Provenzale D, Griffin JM, Phelan S, van Ryn M. Transportation: a vehicle or roadblock to cancer care for VA patients with colorectal cancer? Clinical Colorectal Cancer. 2012 Mar 1; 11(1):60-5.
- Zafar SY, Malin JL, Grambow SC, Abbott DH, Schrag D, Kolimaga JT, Zullig LL, Weeks JC, Fouad MN, Ayanian JZ, Wallace R, Kahn KL, Ganz PA, Catalano P, West DW, Provenzale D, Cancer Care and Outcomes Research and Surveillance (CanCORS) Consortium. Early dissemination of bevacizumab for advanced colorectal cancer: a prospective cohort study. BMC cancer. 2011 Aug 16; 11(1):354.
- Gould MK, Schultz EM, Wagner TH, Xu X, Ghaus SJ, Wallace RB, Provenzale D, Au DH. Disparities in lung cancer staging with positron emission tomography in the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Journal of Thoracic Oncology. 2011 May 1; 6(5):875-83.
- Hamilton NS, Jackson GL, Abbott DH, Zullig LL, Provenzale D. Use of psychosocial support services among male Veterans Affairs colorectal cancer patients. Journal of psychosocial oncology. 2011 May 1; 29(3):242-53.
- van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M, Atienza AA, Phelan S, Finstad D, Rowland J. Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-oncology. 2011 Jan 1; 20(1):44-52.
- Salz T, Weinberger M, Ayanian JZ, Brewer NT, Earle CC, Elston Lafata J, Fisher DA, Weiner BJ, Sandler RS. Variation in use of surveillance colonoscopy among colorectal cancer survivors in the United States. BMC health services research. 2010 Sep 1; 10:256.
- Jackson GL, Melton LD, Abbott DH, Zullig LL, Ordin DL, Grambow SC, Hamilton NS, Zafar SY, Gellad ZF, Kelley MJ, Provenzale D. Quality of nonmetastatic colorectal cancer care in the Department of Veterans Affairs. Journal of clinical oncology : official journal of the American Society of Clinical Oncology. 2010 Jul 1; 28(19):3176-81.
- Fisher DA, Zullig LL, Grambow SC, Abbott DH, Sandler RS, Fletcher RH, El-Serag HB, Provenzale D. Determinants of medical system delay in the diagnosis of colorectal cancer within the Veteran Affairs Health System. Digestive diseases and sciences. 2010 May 1; 55(5):1434-41.
- Zafar SY, Abernethy AP, Abbott DH, Grambow SC, Marcello JE, Herndon JE, Rowe KL, Kolimaga JT, Zullig LL, Patwardhan MB, Provenzale DT. Comorbidity, age, race and stage at diagnosis in colorectal cancer: a retrospective, parallel analysis of two health systems. BMC cancer. 2008 Nov 25; 8:345.
- Ayanian JZ, Chrischilles EA, Fletcher RH, Fouad MN, Harrington DP, Kahn KL, Kiefe CI, Lipscomb J, Malin JL, Potosky AL, Provenzale DT, Sandler RS, van Ryn M, Wallace RB, Weeks JC, West DW. Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium. Journal of clinical oncology : official journal of the American Society of Clinical Oncology. 2004 Aug 1; 22(15):2992-6.
- Haggstrom DA, Phelan SP, Yeazel MW, Arora NK, Clauser SB, Jackson GL, Provenzale D. Impact of Co-Location of Primary and Specialty Care upon Informational Awareness and Decision-Making of Primary Care from Cancer Patients' Perspective. Presented at: VA HSR&D / QUERI National Meeting; 2012 Jul 17; National Harbor, MD.
- Zullig LL, Jackson GL, Provenzale D, Griffin J, Phelan S, van Ryn M. Patient-Reported Cancer Care Coordination in the Veterans Affairs Healthcare System. Presented at: University of North Carolina Lineberger Comprehensive Cancer Center Annual Scientific Meeting; 2012 May 14; Chapel Hill, NC.
- Zullig LL, Provenzale D, McNeil R, Abbott D, Jackson GL. Equity in an Equal Access System: The Effect of Race on Receipt of Guideline-Concordant Surveillance Colonoscopy. Presented at: University of North Carolina Minority Student Caucus Annual Minority Health Conference; 2012 Feb 25; Chapel Hill, NC.
- Zullig LL, Jackson GL, Provenzale D, Griffin J, Phelan S, Vanryn M. Transportation - A Vehicle or Roadblock to Cancer Care for VA Colorectal Cancer Patients? Poster session presented at: AcademyHealth Annual Research Meeting; 2011 Jun 12; Seattle, WA.
- Provenzale D, Jackson GL, van Ryn M, Zullig LL, Ordin DL, Clauser SB. VA Cancer Quality Improvement Initiatives-Research Infrastructure. Poster session presented at: National Cancer Institute Multilevel Interventions in Health Care: Building the Foundation for Future Research Goals Conference; 2011 Mar 5; Las Vegas, NV.
- Phelan SM, Griffin JM, Zafar SY, Jackson GL, Stahre M, van Ryn M. Perceived stigma and depression among colorectal cancer patients. Paper presented at: American Public Health Association Annual Meeting and Exposition; 2010 Nov 8; Denver, CO.
- Zullig LL, Jackson GL, Griffin J, Jindal RM, Clausner S, Han P, Haggstrom D, Zafar SY, Arora N, Stahre M, Provenzale DP, van Ryn M. The C-Cares Survey : A New Instrument to Assess Quality of Care and Communication Patterns in Colorectal Cancer Patients in the Veterans Affairs Healthcare System. Paper presented at: Association of VA Hematology/Oncology Annual Meeting; 2010 Oct 10; Little Rock, AR.
- van Ryn M, Jackson GL. Results of a Patient-Centered Questionnaire for Assessing Quality of Colorectal Cancer Care. Paper presented at: AcademyHealth Annual Research Meeting; 2010 Jun 28; Boston, MA.
- Jackson GL, Melton LD, Abbott D, Zullig LL, Ordin DL, Grambow SC, Hamilton NS, Zafar SY, Gellad ZF, Provenzale D. Linking Practice Guidelines and Abstraction of Electronic Medical Record Data to Measure the Quality of Cancer Care. Paper presented at: AcademyHealth Annual Research Meeting; 2009 Jun 25; Chicago, IL.
- Zullig LL, Jackson GL, Paynter BK, Khwaja R, Powell AA, Ordin DL, Gellad ZF, Zafar SY, Hamilton NS, Newlin CB, Provenzale D. Colorectal Cancer Patient Refusal of Adjuvant Chemotherapy by Stage of Disease. Poster session presented at: VA HSR&D National Meeting; 2009 Feb 14; Baltimore, MD.
- Provenzale D. The Use of Bevacizumab after US Food & Drug Administration Approval for First-Line Metastatic Colorectal Cancer: A Cancer Outcomes Research and Surveillance Consortium (CanCORS) Study. Paper presented at: VA HSR&D National Meeting; 2009 Feb 13; Baltimore, MD.
- Zafar SY, Grambow S, Abbott D, Schrag D, Kolimaga J, Weeks J, Provenzale D. Use of bevacizumab after U.S. Food and Drug Administration (FDA) approval for first-line metastatic colorectal cancer (mCRC): A Cancer Outcomes Research & Surveillance Consortium (CanCORS) study. Poster session presented at: American Society of Clinical Oncology Annual Meeting; 2008 May 30; Chicago, IL.
- Zafar SY, Grambow S, Abbott D, Conner L, Kolimaga J, Provenzale D. Determinants of Delivery of Chemotherapy for Metastatic Colorectal Cancer (mCRC): A Cancer Outcomes Research & Surveillance Consortium (CanCORS) Study. Poster session presented at: Duke University Comprehensive Cancer Center Annual Meeting; 2008 Mar 10; Durham, NC.
- Zafar SY, Abernethy AP, Abbott D, Herndon J, Rowe K, Kolimaga J, Conner L, Patwardhan M, Grambow SZ, Provenzale DT. Comorbidity, age and stage at diagnosis in colorectal cancer (CRC). Paper presented at: American Society of Clinical Oncology Annual Meeting; 2007 Aug 1; Chicago, IL.
- Provenzale D, van Ryn, Grambow S, Kolimaga J. Cancer Care Outcomes Research and Surveillance Consortium (CanCORS). Paper presented at: VA HSR&D National Meeting; 2006 Feb 15; Arlington, VA.
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