Multilingual Self-Management Resources for Prostate Cancer Survivors and Their Partners: Results of a Long-Term Academic-State Health Department Partnership to Promote Survivorship Care.

OBJECTIVE: To provide innovative, evidence-based self management information and supportive care for prostate cancer survivors and their partners. We describe how an academic-public partnership facilitated the broad dissemination of evidence-based, multilingual survivorship educational materials via a state-managed prostate cancer website. METHODS: We outline the steps of an academic-public partnership leading to dissemination of online, survivorship materials as a resource for prostate cancer survivors and their partners. We examined the 5-year utilization of the materials from January 2011 to December 2015 according to 14 content areas (e.g., urinary, bowel, and sexual problems, fatigue, communication, cancer stress) and across 3 languages (English, Spanish, Arabic). RESULTS: The total number of prostate cancer survivorship materials downloaded from January 2011 to December 2015 was 89,348. The number of downloaded materials increased over time from 6,421 in 2011 to 17,496 in 2015. The most commonly downloaded content area was urine problems (27.5%), followed by bowel problems (23.4%) and sexual side effects (16.2%). The majority of downloaded materials was in English (86.3%), followed by Spanish (9.8%) and Arabic (3.9%). CONCLUSION: The academic-public partnership facilitated broad dissemination of evidence-based informational materials for prostate cancer survivors and their partners through a state-managed website from 2011 to 2015. Given the increasing role of academic-public partnerships in funding and development of robust, sustainable prostate cancer survivorship resources, this work serves as an introduction to these evidence-based materials and highlights a successful model of engagement between practitioners, research scientists, and public health administration.

Evaluating long-term patient-centered outcomes following prostate cancer treatment: findings from the Michigan Prostate Cancer Survivor study.

CONTEXT: Advances in screening and treatment of prostate cancer have dramatically increased the number of survivors in the US population. Yet the effect of screening is controversial, and in some instances may not be beneficial. Previous studies have typically only reported outcomes of treatment and symptoms within a short time frame following treatment. The persistence of such symptoms over time necessitates an improvement of survivor care so that the medical and support needs of these patients are met. OBJECTIVE: This study aims to perform a patient-centered survey of prostate cancer survivors in the Michigan Cancer Registry to identify treatment side effect rates, evaluate survivors' access to preventive care services post-prostate cancer treatment, and assess the informational needs of these survivors regarding their prostate cancer. DESIGN, SETTING, AND PATIENTS: Linking case files of the Michigan Cancer Registry with records from the National Death Index, we identified prostate cancer patients diagnosed between 1985 and 2004 and alive on 31 December 2005. Participants were selected using a stratified cross-sectional sampling strategy to ensure adequate inclusion of survivors based upon race and ethnicity, urban versus rural location, and number of years since diagnosis of prostate cancer. A total of 2,499 surveys were completed and returned. MAIN OUTCOME MEASURES: (1) Physical symptoms--assessing bowel, sexual, urinary, and vitality symptoms by treatment modality. (2) Access to care--identifying whether diagnostic tests for prostate cancer (prostate-specific antigen (PSA) and digital rectal examination) were performed. Determining whether the survivors had knowledge of the "watchful waiting" paradigm for prostate cancer surveillance. (3) Informational needs--assessing whether the informational needs of patients were addressed by providers. Evaluating the significant predictors associated with seeking information about prostate cancer from any other source. Identifying what factors influenced a person to actively seek out information and what factors guide which primary information source a survivor would use. RESULTS: Median duration between prostate cancer diagnosis and survey response was 9 years. Of the study population, 80 % was diagnosed at an early stage. Survivors had reported significant problems in the 4 weeks prior to survey. Of the survivors, 88.1 % reported having a PSA test since diagnosis of prostate cancer, with 93 % of them having it done at least once per year. Of the survivors, 82.6 % reported that a healthcare provider gave them information on prostate cancer. Of this 82.6 %, 86.4 % had this information provided by a urologist, 45.4 % by a primary care physician, and 29.2 % by an oncologist. The primary source of information for these survivors was "healthcare provider" (59.2 %). CONCLUSION: Persistent symptoms subsequent to prostate cancer treatment suggest a gap in symptom management. Future research should support long-term studies of active surveillance versus active treatment outcomes to understand the feasibility of minimizing the burden of long-term physical symptoms arising from prostate cancer treatment. Clinicians must assess post-treatment distress long after treatment has ended to identify when supportive care is needed. More informational resources should be allocated to prostate cancer survivors to ensure that they are well-educated about their prognosis. IMPLICATIONS FOR 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.

Primary care perspectives on prostate cancer survivorship: implications for improving quality of care.

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.

Primary care perspectives on prostate cancer screening.

Although the effectiveness of prostate cancer screening is controversial, screening rates have risen dramatically among primary care providers in the United States. The authors' findings suggest more collaboration among primary care and specialty organizations, especially with respect to decision aid endorsement, is needed to achieve more discriminatory and patient-centered prostate cancer screening.