Patient and physician views on providing cancer patient-specific survival information.

OBJECTIVES/HYPOTHESIS: To gather input regarding the presentation, content, and understanding of survival and support information for Prognostigram, a computer-based program that uses standard cancer registry data elements to present individualized survival estimates. STUDY
DESIGN: Cross-sectional survey research.
METHODS: Two groups of patients (total n=40) and one group of physicians (n=5) were interviewed. The patient groups were interviewed to assess baseline patient numeracy and health literacy, and patient desire for prognostic information. The first group (n=20) was introduced to generalized survival curves in a paper booklet. The second group (n=20) was introduced to individualized survival curves from Prognostigram on the computer. Both patient groups were queried about the survival curves. The physicians were asked their opinions on sharing prognostic information with patients.
RESULTS: Numeracy assessments indicated that the patients are able to understand concepts and statistics presented by Prognostigram. According to the patient interviews, the Internet is the most frequent source for survival statistics. Of the 40 patient participants, 39 reported survival statistics as being somewhat or very useful to cancer patients. All five physicians believed survival statistics were useful to patients and physicians, and noted accurate and understandable survival statistics are fundamental to facilitate discussions with patients regarding prognosis and expectations.
CONCLUSIONS: Formative research indicates that cancer patients and their families actively seek survival statistics on their own. All patients indicated strong interest in Prognostigram, which is a software tool designed to produce individualized survival statistics to oncologists and cancer patients in a user-friendly manner. LEVEL OF EVIDENCE: 4.