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Negative information-seeking experiences of long-term prostate cancer survivors

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Abstract

Purpose

Many prostate cancer survivors have lasting symptoms and disease-related concerns for which they seek information. To understand survivors’ information-seeking experiences, we examined the topics of their information searches, their overall perceptions of the search, and perceptions of their health information seeking self-efficacy (i.e., confidence in their ability to obtain information). We hypothesized that negative search experiences and lower health information seeking self-efficacy would be associated with certain survivor characteristics such as non-white race, low income, and less education.

Methods

This was a retrospective study using data from the Michigan Prostate Cancer Survivor Study (state-based survey of long-term prostate cancer survivor outcomes, N = 2499, response rate = 38 %). Participants recalled their last search for information and reported the topics and overall experience. We conducted multivariable regression to examine the association between survivor characteristics and the information-seeking experience.

Results

Nearly a third (31.7 %) of prostate cancer survivors (median age of 76 years and 9 years since diagnosis) reported having negative information-seeking experiences when looking for information. However, only 13.4 % reported having low health information-seeking self-efficacy. Lower income and less education were both significantly associated with negative information-seeking experiences.

Conclusions

Our findings suggest that many long-term prostate cancer survivors have negative experiences when searching for information, and lower income and less education were survivor factors related to negative information-seeking experiences.

Implications for cancer survivors

We advocate for ongoing, information needs assessment at the point-of-care as the survivorship experience progresses to assess and potentially improve survivors’ quality of life.

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Author information

Authors and Affiliations

  1. Indiana University School of Nursing, 1111 Middle Dr., Indianapolis, IN, 46202, USA

    Jennifer K. Bernat

  2. University of Michigan, Ann Arbor, MI, USA

    Ted A. Skolarus, Sarah T. Hawley & Daniela A. Wittmann

  3. VA Health Services Research and Development Center for Clinical Management Research, VA Ann Arbor Healthcare System, Ann Arbor, MI, USA

    Ted A. Skolarus

  4. VA Health Services Research and Development Center for Health Information and Communication, Roudebush VAMC, Indianapolis, IN, USA

    David A. Haggstrom

  5. Division of General Internal Medicine and Geriatrics, Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA

    David A. Haggstrom

  6. Michigan Public Health Institute, Okemos, MI, USA

    May Darwish-Yassine

Authors
  1. Jennifer K. Bernat
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  2. Ted A. Skolarus
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  3. Sarah T. Hawley
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  4. David A. Haggstrom
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  5. May Darwish-Yassine
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  6. Daniela A. Wittmann
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Corresponding author

Correspondence to Jennifer K. Bernat.

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Funding

Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under Award Number R25CA117865 to Dr. Bernat and the US Department of Veterans Affairs Health Services Research and Development Career Development Award Number CDA 12-171 to Dr. Skolarus. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of interest

Authors Bernat, Skolarus, Hawley, Haggstrom, and Darwish-Yassine declare that they have no conflict of interest. Author Wittmann has Movember Foundation research funding (15-PAF05268) and is a member of the Prostate Cancer Task Force of the Urology Care Foundation, the Educational Committee of the American Urological Association, and the Mental Health committee of the Sexual Medicine Society of America. She has received honoraria for speaking at a community event ($250) and at the American Society for Radiation Oncology ($250).

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Bernat, J.K., Skolarus, T.A., Hawley, S.T. et al. Negative information-seeking experiences of long-term prostate cancer survivors. J Cancer Surviv 10, 1089–1095 (2016). https://doi.org/10.1007/s11764-016-0552-5

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  • DOI: https://doi.org/10.1007/s11764-016-0552-5

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