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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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| Authors: | Jennifer L. Malin Clifford Ko John Z. Ayanian David Harrington David R. Nerenz Katherine L. Kahn Julie Ganther-Urmie Paul J. Catalano Alan M. Zaslavsky Robert B. Wallace Edward Guadagnoli Neeraj K. Arora Maryse D. Roudier Patricia A. Ganz |
| Affiliation: | (1) Division of General Internal Medicine-Health Services Research, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, CA, USA;(2) Division of Hematology-Oncology, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, CA, USA;(3) RAND, Santa Monica, CA, USA;(4) Amgen, One Amgen Center Drive, MS 28-3-A, Thousand Oaks, CA 91320, USA;(5) Department of Surgery, David Geffen School of Medicine, University of California, Los Angeles, CA, USA;(6) Division of General Medicine, Department of Medicine, Brigham and Women’s Hospital, Boston, MA, USA;(7) Department of Health Care Policy, Harvard Medical School, Boston, MA, USA;(8) Department of Biostatistics and Computational Biology, Dana-Farber Cancer Institute, Boston, MA, USA;(9) Center for Health Services Research, Henry Ford Health System, Detroit, MI, USA;(10) Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, IA, USA;(11) Outcomes Research Branch, A.R.P., D.C.C.P.S., National Cancer Institute, Bethesda, MD, USA;(12) Frontier Science and Technology Research Foundation, Boston, MA, USA;(13) Department of Health Services, School of Public Health, University of California, Los Angeles, CA, USA |
| 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. |
| Keywords: | Quality of health care Patterns of care Outcome assessment Process assessment Patient satisfaction Decision making Health disparities |
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