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Understanding cancer patients’ experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey

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Abstract

Goals of work

The National Cancer Institute’s Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium is conducting a population-based study of newly diagnosed patients with lung and colorectal cancer to describe the experience of persons living with cancer and to understand which barriers present the most significant obstacles to their receipt of appropriate care. The keystone to this effort is the baseline patient survey administered approximately 4 months after diagnosis.

Patients and methods

We developed a survey to obtain information from patients newly diagnosed with lung and colorectal cancer about their personal characteristics, decision making, experience of care, and outcomes. We conducted a pilot study to evaluate the feasibility of a lengthy and clinically detailed interview in a convenience sample of patients within 8 months of diagnosis (n=71).

Main results

The median length of the interviews was 75 min for patients with lung cancer (range 43–130) and 82 min for patients with colorectal cancer (range 46–119). Most patients had received some form of treatment for their cancer: 66.1% had undergone surgery, 28.2% had received radiation therapy, and 54.9% were treated with chemotherapy. In addition, 26.7% reported their overall health was less than 70 on a 0–100 scale, demonstrating that patients with substantial health impairment were able to complete the survey.

Conclusions

A clinically detailed survey of newly diagnosed lung and colorectal cancer patients is feasible. A modified version of this survey is being fielded by the CanCORS Consortium and should provide much needed population-based data regarding patients’ experiences across the continuum of cancer care and their outcomes.

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Acknowledgements

We thank Marci Campbell, Virginia Casey, Elizabeth Chrischilles, Craig Earle, Mona Fouad, Nancy Keating, Josh Klapow, Carrie Klabunde, Joseph Lipscomb, Arnold Potosky, Robert Sandler, Joan Teno, Jane Weeks, and Dee West for their thoughtful suggestions; Ronald Hays, Jack Fowler, and Gordon Willis for reviewing an initial draft of the patient survey; and Gary Ansell, Susan Baum, Diana Evensen, Judy Goldstein, Susan Jackson, Barbara Kahn, and Erin Sedars for recruiting patients for the pilot study and helpful feedback on the survey design. This study is supported by grants from the National Cancer Institute (U01 CA93324, U01 CA93326, U01 CA93329, U01 CA93332, U01 CA93339, U01 CA93344, and U01 CA93348) and from the Department of Veterans Affairs (CRS 02-164). Dr. Malin received funding from a CI-10 Damon Runyon-Lilly Clinical Investigator Award from the Damon Runyon Cancer Research Foundation.

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Authors and Affiliations

  1. Division of General Internal Medicine-Health Services Research, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, CA, USA

    Jennifer L. Malin & Katherine L. Kahn

  2. Division of Hematology-Oncology, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, CA, USA

    Jennifer L. Malin

  3. RAND, Santa Monica, CA, USA

    Jennifer L. Malin & Katherine L. Kahn

  4. Amgen, One Amgen Center Drive, MS 28-3-A, Thousand Oaks, CA, 91320, USA

    Jennifer L. Malin

  5. Department of Surgery, David Geffen School of Medicine, University of California, Los Angeles, CA, USA

    Clifford Ko

  6. Division of General Medicine, Department of Medicine, Brigham and Women’s Hospital, Boston, MA, USA

    John Z. Ayanian

  7. Department of Health Care Policy, Harvard Medical School, Boston, MA, USA

    John Z. Ayanian, Alan M. Zaslavsky & Edward Guadagnoli

  8. Department of Biostatistics and Computational Biology, Dana-Farber Cancer Institute, Boston, MA, USA

    David Harrington & Paul J. Catalano

  9. Center for Health Services Research, Henry Ford Health System, Detroit, MI, USA

    David R. Nerenz

  10. Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, IA, USA

    Julie Ganther-Urmie & Robert B. Wallace

  11. Outcomes Research Branch, A.R.P., D.C.C.P.S., National Cancer Institute, Bethesda, MD, USA

    Neeraj K. Arora

  12. Frontier Science and Technology Research Foundation, Boston, MA, USA

    Maryse D. Roudier

  13. Department of Health Services, School of Public Health, University of California, Los Angeles, CA, USA

    Patricia A. Ganz

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  1. Jennifer L. Malin
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  2. Clifford Ko
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  14. Patricia A. Ganz
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Correspondence to Jennifer L. Malin.

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Malin, J.L., Ko, C., Ayanian, J.Z. et al. Understanding cancer patients’ experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey. Support Care Cancer 14, 837–848 (2006). https://doi.org/10.1007/s00520-005-0902-8

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  • DOI: https://doi.org/10.1007/s00520-005-0902-8

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