Understanding cancer patients’ experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey
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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).
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.
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.
KeywordsQuality of health care Patterns of care Outcome assessment Process assessment Patient satisfaction Decision making Health disparities
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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