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

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.

Symptom burden and information needs in prostate cancer survivors: a case for tailored long-term survivorship care.

OBJECTIVES: To determine the relationship between long-term prostate cancer survivors' symptom burden and information needs. PATIENTS AND METHODS: We used population-based data from the Michigan Prostate Cancer Survivor Study (2499 men). 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 [odds ratio (OR) 2.05, 95% confidence interval (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.

Partner's Perspective on Long-term Sexual Dysfunction After Prostate Cancer Treatment.

OBJECTIVE: Prostate cancer is the most common type of male cancer in the United States and the negative effect of prostate cancer treatment on sexual function has been well documented. The objective of this study was to examine the long-term impact of sexual dysfunction on spouses or partners of prostate cancer survivors. METHODS: A total of 742 spouses of prostate cancer survivors was mailed surveys by the Michigan Public Health Institute, of which 379 were returned (51%). Nine surveys were excluded owing to study ineligibility. Spouses responding to the survey completed a combination of modified items from the Sexual Adjustment Questionnaire and researcher-developed items. RESULTS: Over 75% of spouses reported a decline in sex life quality after treatment. Communication about sexual issues between survivors and their health care providers was rated as good to excellent by 54.7% of partners, whereas 35.1% reported it as fair to poor. Approximately 60% of physicians initially recommended some form of sexual treatment. However, despite the persistence of sexual dysfunction, only 7% of the prostate cancer survivors were currently receiving treatment. Only 4.1% of health care providers referred the survivor to a sex therapist. CONCLUSIONS: Physicians need to understand the importance of the open, ongoing communication with prostate cancer survivors about sexual issues because sexual dysfunction seems to continue indefinitely after completion of treatment. Research on the effectiveness of behavioral interventions in restoring sexual health is critically needed for this population, especially as first-line sexual aids and medications are often not satisfactory solutions.

An assessment of gynecological cytology screening practices among health care providers nationwide.

CONTEXT: The Michigan Public Health Institute and the Michigan Cancer Consortium's Cervical Cancer Committee conducted a national survey of health care providers, thanks to funding from the Centers for Disease Control Cooperative Agreement 5U47CI000743-02. Papanicolaou test screening practices were examined, emphasizing the relationship between clinical and laboratory practices. This survey found differing screening practices among providers of women's health care. OBJECTIVES: To collect information from family medicine practitioners, women's nurse practitioners, obstetricians and gynecologists, and certified nurse-midwives on Papanicolaou and human papillomavirus testing; to discuss how those practices align with current cytology screening and follow-up recommendations from professional organizations (US Preventive Services Task Force, American Cancer Society, American College of Obstetricians and Gynecologists, and American Society for Colposcopy, and Cervical Pathology); and ultimately, to make recommendations aimed at standardizing practice performance. DESIGN: This survey was conducted in part to examine clinicians' practices and their perceptions of laboratory performance, to evaluate items that are known to enhance quality of care, and to examine factors that may prohibit universal implementation of best standards of care. The survey used a self-administered questionnaire, distributed to 9366 clinicians, with 1601 (17.1%) completed surveys. RESULTS: This assessment shows a clear lack of consensus among practitioners in performing Papanicolaou testing. It demonstrates how differently patients are tested, based on the providers' screening practices, and demonstrates specific cervical cancer screening practice disparities between and among the 4 provider groups, both in Papanicolaou testing and in the use of human papillomavirus testing. CONCLUSION: A unified mandate for screening is needed to standardize screening practices.

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.