Objectives To determine the relationship between long-term prostate cancer survivors’ symptom burden and information needs. Subjects/patients and methods We used population-based data from the Michigan Prostate Cancer Survivor Study (n=2,499). We examined unadjusted differences in long-term information needs according to symptom burden and performed multivariable logistic regression to examine symptom burden and information needs adjusting for patient characteristics. Results High symptom burden was reported across all domains (sexual 44.4%, urinary 14.4%, vitality 12.7%, bowel 8.4%, emotional 7.6%) with over half of respondents (56%) reporting they needed more information. Top information needs involved recurrence, relationships, and long-term effects. Prostate cancer survivors with high symptom burden more often searched for information regardless of domain (p<0.05). High sexual burden was associated with greater need for information about relationships (OR=2.05; 95% CI 1.54–2.72) and long-term effects (OR=1.60; 95% CI 1.23–2.07). High bowel burden was associated with greater information need for long-term effects (OR=2.28; 95% CI 1.43–3.63). Conclusions Long-term prostate cancer survivors with high symptom burden need more supportive information. Tailoring information to these needs may be an efficient approach to support the growing population of long-term prostate cancer survivors.

This study is needed to ensure that the post-treatment symptoms of prostate cancer survivors are properly addressed and managed by healthcare providers over the long term.

OBJECTIVES Primary care providers often care for men with prostate cancer due to its prolonged clinical course and an increasing number of survivors. However, their attitudes and care patterns are inadequately studied. In this context, we surveyed primary care providers regarding the scope of their prostate cancer survivorship care. METHODS The 2006 Early Detection and Screening for Prostate Cancer Knowledge, Attitudes and Practice Survey conducted by the Michigan Public Health Institute investigated the beliefs and practice patterns of primary care providers in Michigan. We evaluated responses from 902 primary care providers regarding the timing and content of their prostate cancer survivorship care and relationships with specialty care. RESULTS Two-thirds (67.6%) of providers cared for men during and after prostate cancer treatment. Providers routinely inquired about incontinence, impotence and bowel problems (83.3%), with a few (14.2%) using surveys to measure symptoms. However, only a minority felt ‘very comfortable’ managing the side effects of prostate cancer treatment. Clear plans (76.1%) and details regarding management of treatment complications (65.2%) from treating specialists were suboptimal. Nearly one-half (45.1%) of providers felt it was equally appropriate for them and treating specialists to provide prostate cancer survivorship care. CONCLUSIONS Primary care providers reported that prostate cancer survivorship care is prevalent in their practice, yet few felt very comfortable managing side effects of prostate cancer treatment. To improve quality of care, implementing prostate cancer survivorship care plans across specialties, or transferring primary responsibility to primary care providers through survivorship guidelines, should be considered.

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=2,499, 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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