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


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).


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.
Malin
Jennifer L
JL
Division of General Internal Medicine-Health Services Research, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, CA, USA. jmalin@amgen.com
Ko
Clifford
C
Ayanian
John Z
JZ
Harrington
David
D
Nerenz
David R
DR
Kahn
Katherine L
KL
Ganther-Urmie
Julie
J
Catalano
Paul J
PJ
Zaslavsky
Alan M
AM
Wallace
Robert B
RB
Guadagnoli
Edward
E
Arora
Neeraj K
NK
Roudier
Maryse D
MD
Ganz
Patricia A
PA
D000368:Aged; D015331:Cohort Studies; D015179:Colorectal Neoplasms / Q000523:psychology / Q000628:therapy; D032882:Comprehension; D003657:Decision Making; D005240:Feasibility Studies; D005260:Female; D006302:Health Services Research; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D007407:Interviews as Topic / Q000379:methods* / Q000592:standards; D008175:Lung Neoplasms / Q000523:psychology / Q000628:therapy; D008297:Male; D008875:Middle Aged; D010865:Pilot Projects; D011788:Quality of Life; D012107:Research Design; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014481:United States