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

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.

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.

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.

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.

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.

Journal of cancer survivorship : research and practice. 2016 May 26 [Epub ahead of print]

Jennifer K Bernat, Ted A Skolarus, Sarah T Hawley, David A Haggstrom, May Darwish-Yassine, Daniela A Wittmann

Indiana University School of Nursing, 1111 Middle Dr., Indianapolis, IN, 46202, USA. ., University of Michigan, Ann Arbor, MI, USA., University of Michigan, Ann Arbor, MI, USA., VA Health Services Research and Development Center for Health Information and Communication, Roudebush VAMC, Indianapolis, IN, USA., Michigan Public Health Institute, Okemos, MI, USA., University of Michigan, Ann Arbor, MI, USA.