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

Authors

  • Nancy L. Solowski MD,

    1. Department of Otolaryngology–Head and Neck Surgery, Washington University School of Medicine, St. Louis, Missouri, U.S.A.
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  • Oluwafunmilola T. Okuyemi MD,

    1. Department of Otolaryngology–Head and Neck Surgery, Washington University School of Medicine, St. Louis, Missouri, U.S.A.
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  • Dorina Kallogjeri MD, MPH,

    1. Department of Otolaryngology–Head and Neck Surgery, Washington University School of Medicine, St. Louis, Missouri, U.S.A.
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  • Joyce Nicklaus BA, RN,

    1. Department of Otolaryngology–Head and Neck Surgery, Washington University School of Medicine, St. Louis, Missouri, U.S.A.
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  • Jay F. Piccirillo MD, FACS

    Corresponding author
    1. Department of Otolaryngology–Head and Neck Surgery, Washington University School of Medicine, St. Louis, Missouri, U.S.A.
    • Send correspondence to Jay F. Piccirillo, MD, Department of Otolaryngology, Washington University School of Medicine, 660 South Euclid Avenue, Box 8115, Saint Louis, MO 63110. E-mail: piccirilloj@ent.wustl.edu

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  • This work was awarded first prize in the Head and Neck category at the poster session at the 115th Triological Society COSM Meeting in San Diego, California, U.S.A., April 18–22, 2012.

  • Financial support was received, in part, from the National Institutes of Health–National Institute on Deafness and Other Communication Disorders, and the Ruth L. Kirschstein National Research Service Award Institutional Research Training Grant (T32), titled Development of Clinician/Researchers in Academic ENT (5T32DC000022).

  • The authors have no other funding, financial relationships, or conflicts of interest to disclose.

Abstract

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. Laryngoscope, 124:429–435, 2014

Ancillary