Development and evaluation of a bladder Cancer specific survivorship care plan by patients and clinical care providers: a multi-methods approach.

BACKGROUND, CONTEXT AND PURPOSE: In spite of the mixed evidence for their impact, survivorship Care Plans (SCPs) are recommended to enhance quality of care for cancer survivors. Data on the feasibility of SCPs in bladder cancer (BC) is sparse. Using a mixed-methods approach, this study describes the iterative development, acceptability and feasibility of BC specific SCP (BC-SCP) in clinical settings. METHODS: In Phase I, we developed the BC-SCP. In Phase II, we conducted four focus groups with 19 patients and 15 providers to examine its acceptability and usability challenges. Data analyses using the Atlas.ti program, informed refinement of the BC-SCP. In Phase III, we conducted feasibility testing of the refined BC-SCP with 18 providers from 12 health-centers. An encounter survey was completed after each assessment to examine the feasibility of the BC-SCP. Chi-square and Fisher Exact tests were used for comparative analyses. RESULTS: During phase I, we observed high patient and provider acceptability of the BC-SCP and substantial engagement in improving its content, design, and structure. In Phase II, providers completed 59 BC-SCPs. Mean time for BC-SCP completion was 12.3 min. Providers reported that BC-SCP content was clear, did not hamper clinic flow and was readily completed with easy-to-access information. Comparative analyses to examine differences in SCP completion time by patient clinico-demographic characteristics and provider type revealed no significant differences. CONCLUSIONS: Our BC-SCP has clinical relevance, and can be used in an active practice setting. However, considerable progress will be necessary to achieve implementation of and sharing the BC-SCP with patients and care providers, particularly within the electronic medical record. In summary, BC-SCPs are essential to improve the follow up care of BC survivors. Clinical resources are required to ensure appropriate implementation of BC-SCPs. TRIAL REGISTRATION: Study HUM00056082.

Lesbian, gay, and transgender veterans' experiences in the Veterans Health Administration: Positive signs and room for improvement.

This study explored the characteristics of lesbian, gay, and transgender veteran users of Veterans Health Administration (VHA) services and nonusers, using a national convenience sample. Participants responded to an online, anonymous survey posted on LGBT websites and forwarded through personal contacts, using a snow-ball sampling strategy, resulting in a final sample of 218. Most participants were enrolled in VHA (n = 151). VHA users were older, more ethnically diverse, had less income, and were less public about their sexual or gender minority identity than nonusers. VHA users and nonusers did not differ on depression, anxiety, alcohol use, or tobacco use; although VHA users had more physical limitations and chronic medical conditions and lower health literacy than nonusers. Most lesbian, gay, and transgender VHA users felt welcome at their facility and comfortable disclosing their sexual orientation and gender identity with their provider. Compared with earlier studies, the positive experiences of lesbian, gay, and transgender VHA users in this study provide supportive evidence that VHA staff training efforts to raise awareness and competency have been successful. Additional efforts are needed to understand why transgender men feel less welcome and comfortable disclosing their gender identity. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Health Differences Among Lesbian, Gay, and Transgender Veterans by Rural/Small Town and Suburban/Urban Setting.

PURPOSE: We explored the relationship between geographic location and health indicators for lesbian, gay, and transgender veterans. METHODS: We solicited participation in an online survey through national and city LGBT organizations and personal contacts to examine differences in depression, anxiety, alcohol and tobacco use, and body mass index among lesbian, gay, and transgender veterans (n = 252) in suburban/urban and rural/small town locations. Bisexual participants were too few to include in the analyses. RESULTS: As expected, rural/small town lesbian, gay, and transgender veterans spent more time traveling to their primary care provider. Travel time was also positively related to depressive and anxiety symptoms. However, only suburban/urban and rural/small town gay men differed in measures of depression and anxiety and tobacco use. That is, rural/small town gay men reported greater depressive and anxiety symptoms and greater tobacco use than their suburban/urban counterparts. Consistent with this finding, rural/small town gay men reported less community-related identity than suburban/urban men. Suburban/urban lesbian women showed a nonsignificant trend for community identity compared with rural/small town women. CONCLUSION: Similar to civilian studies, suburban/urban and rural/small town lesbian, gay, and transgender veterans evidenced few health differences, with the exception of suburban/urban gay men. Although rural/small town gay male veterans evidenced more depression and anxiety and less community identity than suburban/urban men, social networks likely differ for lesbian, gay, and transgender subgroups. Lesbian, gay, and transgender veterans may also differ from their civilian counterparts in ways that we do not yet understand.

The effects of attachment and outness on illness adjustment among gay men with prostate cancer.

OBJECTIVE: Previous research has suggested that gay men facing prostate cancer may be particularly vulnerable to poor illness adjustment. Moreover, although attachment and greater disclosure of sexual orientation have been associated with health outcomes, their associations in this population have been largely unexamined. The purpose of the present study was to investigate whether greater outness about one's sexual orientation significantly mediated the associations between anxious and avoidant attachment and illness intrusiveness among gay men with prostate cancer. METHODS: Ninety-two gay and bisexual men who had received a diagnosis of prostate cancer in the past 4 years were recruited for the present study. Self-report questionnaires assessed demographic and medical variables, attachment, outness level and comfort, and illness intrusiveness. Bootstrapping procedures were used to assess for mediation. RESULTS: Results suggested significant associations between anxious attachment, outness comfort, and illness intrusiveness. Less comfort with outness significantly mediated the association between greater anxious attachment and more illness intrusiveness. Avoidant attachment was not significantly associated with illness intrusiveness. CONCLUSIONS: Findings support the mediating role of the subjective experience of being an out gay man in the association between anxious attachment and illness intrusiveness. These results suggest that facilitating greater comfort with outness would be beneficial for illness adjustment among gay men with prostate cancer whom have more anxious attachment styles. Copyright © 2015 John Wiley & Sons, Ltd.

Unmet informational and supportive care needs of patients following cystectomy for bladder cancer based on age, sex, and treatment choices.

PURPOSE: Assessing the unmet needs of cancer patients can help providers tailor health care services to patients' specific needs. This study examines whether the unmet informational and supportive care needs of the patients with muscle-invasive bladder cancer vary by the patients' age, sex, or individual treatment choices. METHODS AND MATERIALS: Participants (N = 30 survivors; 73.3% men) were recruited from the Mount Sinai Medical Center and through advertisements posted on a national Bladder Cancer Advocacy Network website between December 2011 and September 2012. Data were collected through individual interviews and electronic medical record review. A prior qualitative study of this cohort, using immersion/crystallization approach, confirmed the prevalence of unmet needs across the disease trajectory. This is a secondary quantitative analysis of the initial interview data we collected (i.e., quantitative analyses of transformed qualitative data using Chi-square and Fisher exact tests) to examine differences in unmet needs based on the patient's age, sex, and treatment choices. RESULTS: Younger patients (<60y) were less satisfied with the treatment information received presurgery and more likely to report posttreatment complications, choose a neobladder, and seek and receive professional support regarding sexual function, than were older patients (P<0.05). More women than men reported difficulties with self-care and relied on themselves in disease self-management as opposed to relying on spousal support (P<0.05). Patients with neobladder were more likely to report difficulties with urinary incontinence and deterioration in sexual function, whereas patients with ileal conduit were more likely to require spousal help with self-care. Patients who received chemotherapy were significantly more likely to report changes in everyday life (P<0.05). Lastly, regardless of age, sex, or treatment choice, up to 50% of patients reported feeling depressed before or after treatment. CONCLUSIONS: Unmet informational and supportive needs of patients with muscle-invasive bladder cancer during survivorship, and vary by age, sex, and treatment choices. Educational and psychological assessments as well as clinical interventions should be tailored to a patient's specific unmet needs, and to specific clinical and demographic characteristics.

Relationship between illness uncertainty, anxiety, fear of progression and quality of life in men with favourable-risk prostate cancer undergoing active surveillance.

OBJECTIVES: To evaluate prospectively the associations between illness uncertainty, anxiety, fear of progression and general and disease-specific quality of life (QoL) in men with favourable-risk prostate cancer undergoing active surveillance (AS). PATIENTS AND METHODS: After meeting stringent enrollment criteria for an AS cohort study at a single tertiary care cancer centre, 180 men with favourable-risk prostate cancer completed questionnaires at the time of enrollment and every 6 months for up to 30 months. Questionnaires assessed illness uncertainty, anxiety, prostate-specific QoL (using the Expanded Prostate Cancer Index Composite [EPIC] scale) and general QoL (using the 12-time short-form health survey [SF-12]) and fear of progression. We used linear mixed-model analyses and multilevel mediation analyses. RESULTS: Sexual scores on the EPIC scale significantly declined over time (P < 0.05). Illness uncertainty was a significant predictor of all EPIC summary scores, SF-12 physical component summary (PCS) scores, mental component summary (MCS) scores and fear of progression scores (all P < 0.05), after controlling for demographic and clinicopathological factors. Anxiety predicted all EPIC summary, MCS and fear of progression scores (all P < 0.05) but not PCS scores (P = 0.08). Scores on PCS, MCS, EPIC summary scales (except sexual scale), and fear of progression did not change significantly over the study period (all P > 0.10). CONCLUSION: Over the 2.5-year follow-up, QoL remained stable; only sexual function scores significantly declined. Illness uncertainty and anxiety were significant predictors of general and prostate-specific QoL and fear of progression. Interventions to reduce uncertainty and anxiety may enhance QoL for men with prostate cancer on AS.

The Need for Survivorship Care in Genitourinary Cancers: Considerations from SUO and LUGPA.

INTRODUCTION: A quarter of American cancer survivors have genitourinary malignancies that are largely managed by urologists. We explored urologist perceptions about survivorship care for genitourinary malignancies. METHODS: A total of 701 SUO (Society of Urologic Oncology) and 1,746 LUGPA (Large Urology Group Practice Association) members were invited to complete a web based survey composed of 5 domains, including 1) demographics, 2) current survivorship care practices, 3) perceived barriers, 4) accessibility to survivorship resources and 5) perceptions of advocacy groups. RESULTS: Of 191 respondents 137 (72%) had no training in survivorship care. Of the 174 respondents 129 (74%) practiced shared care models while 45 (26%) preferred pure specialized followup care. Only 39 of 129 respondents (30%) with a shared care model always provided a written care plan. These plans infrequently included information on lifestyle modifications and educational resources. Routine patient referral to advocacy organizations was highest for prostate cancer at 40% followed by bladder, testicular and kidney cancers at 17%, 10% and 8%, respectively. Lack of time/resources and practice guidelines were considered the 2 most important barriers to survivorship care by 31% and 30% of participants, respectively. Web based information on advocacy groups and best practice guidelines were selected as the most important initiatives to promote survivorship care. CONCLUSIONS: Despite the low response rate this study highlights important practice gaps in survivorship care for patients with genitourinary malignancies. In collaboration with advocacy organizations professional societies should initiate programs to better educate and train their members in survivorship care guidelines and consensus best practices.

Summary of the 8th Annual Bladder Cancer Think Tank: Collaborating to move research forward.

OBJECTIVES: The 8th Annual Bladder Cancer Think Tank (BCAN-TT) brought together a multidisciplinary group of clinicians, researchers, and patient advocates in an effort to advance bladder cancer research. METHODS AND MATERIALS: With the theme of "Collaborating to Move Research Forward," the meeting included three panel presentations and seven small working groups. RESULTS: The panel presentations and interactive discussions focused on three main areas: gender disparities, sexual dysfunction, and targeting novel pathways in bladder cancer. Small working groups also met to identify projects for the upcoming year, including: (1) improving enrollment and quality of clinical trials; (2) collecting data from multiple institutions for future research; (3) evaluating patterns of care for non-muscle-invasive bladder cancer; (4) improving delivery of care for muscle-invasive disease; (5) improving quality of life for survivors; (6) addressing upper tract disease; and (7) examining the impact of health policy changes on research and treatment of bladder cancer. CONCLUSIONS: The goal of the BCAN-TT is to advance the care of patients with bladder cancer and to promote collaborative research throughout the year. The meeting provided ample opportunities for collaboration among clinicians from multiple disciplines, patients and patient advocates, and industry representatives.

Fear of recurrence: the importance of self-efficacy and satisfaction with care in gay men with prostate cancer.

OBJECTIVE: Limited research has investigated the psychosocial processes that underpin the effect of physical symptoms on fear of cancer recurrence. Additionally, despite evidence of increased vulnerability of marginalized populations to negative outcomes, few studies have examined the unique experience of gay men coping with the cancer process. The goals of this study were to determine whether disease-related self-efficacy and satisfaction with medical care mediated the relationship between greater physical symptoms and worse fear of recurrence among gay or bisexual prostate cancer survivors. METHODS: Participants were composed of 92 self-identified gay or bisexual men, who had received a diagnosis of prostate cancer in the past 4 years. Participants provided demographic information and completed self-report questionnaires that assessed symptom function, self-efficacy for prostate cancer symptoms, satisfaction with healthcare, and fear of recurrence. Bootstrapping procedures were used to assess for significant mediation. RESULTS: Results suggested significant mediation of the relationship between each of bowel, hormonal, and sexual function with fear of recurrence by self-efficacy and satisfaction with healthcare. Mediation was not significantly supported for the association between urinary function and fear of recurrence. CONCLUSIONS: Findings support the explanatory effects of self-efficacy for symptom management and satisfaction with healthcare on the relationship between symptom function and fear of recurrence. These results indicate that psychological processes, specifically psychological factors that hold particular relevance to gay or bisexual men, reflect a potential avenue for intervention to decrease fear of cancer recurrence.

Preparing Trainees to Deliver Patient-Centered Care in an Ambulatory Cancer Clinic.

The purpose of this paper is to describe how an interprofessional cancer care clinic at the Cleveland Veteran's Affairs Medical Center (VAMC) is training health care professionals in patient-centered care. Teaching strategies included patient huddle discussions pre- and post-clinic, role-play, noon "lunch and learn" conferences, and, most importantly, patient interactions, which were evaluated with the patient perception of patient centeredness (PPPC) instrument. This instrument is designed to capture patient and provider perceptions of the provider's patient centeredness. Early findings demonstrated that patient responses were overwhelmingly positive and lacked variability. In response to the lack of variability, the educator in the clinic participated in the evaluation and patient, provider, and trainer responses were compared. Discussion of the weekly evaluations provided helpful formative feedback on patient centeredness to the trainees rotating through this specialty care clinic.

Examining sexual dysfunction in non-muscle-invasive bladder cancer: results of cross-sectional mixed-methods research.

INTRODUCTION: More than 70,000 new cases of bladder cancer are diagnosed in the United States annually; with 75% being non-muscle-invasive (NMIBC). Research examining sexual dysfunction in bladder cancer survivors is limited, and previous studies have focused on cystectomy patients. AIMS: To evaluate the impact of sexual dysfunction on NMIBC survivors. METHODS: Mixed-methods data collection integrated a quantitative survey (Study 1; n = 117) and semi-structured qualitative interviews (Study 2; n = 26) from a non-overlapping sample of NMIBC survivors. We performed descriptive and classification and regression tree (CART) analyses of survey data and qualitative analysis of interviews. MAIN OUTCOME MEASURES: Self-reported sexual activity, interest in sex, and physiologic symptoms (e.g., male erectile/ejaculatory difficulties, female vaginal dryness) over the previous 4 weeks; partner communication about sexuality; contamination concerns; illness intrusiveness. RESULTS: Participants in these studies averaged 65 years of age (mean and median) and were male (77%), white (91%), and married (75%). Survey (Study 1) results linked NMIBC treatment to sexual symptoms and relationship issues. Many participants reported sexual inactivity (38.8%). Sexually active participants reported erectile difficulties (60.0%), vaginal dryness (62.5%), and worry about contaminating partner with treatment agents (23.2%). While almost one-half reported the usefulness of talking with partners about sexual function, only one-fifth of participants reported sharing all concerns with their partners. CART analysis supported the importance of communication. One-half of interviewees (Study 2) reported sexual dysfunction. Two-thirds reported negative impacts on their relationships, including perceived loss of intimacy and divorce; over one-third were sexually inactive for fear of contaminating their partner or spreading NMIBC. CONCLUSIONS: Survivors' sexual symptoms may result from NMIBC, comorbidities, or both. These results inform literature and practice by raising awareness about the frequency of symptoms and the impact on NMIBC survivors' intimate relationships. Further work is needed to design symptom management education programs to dispel misinformation about contamination post-treatment and improve quality of life. Kowalkowski MA, Chandrashekar A, Amiel GE, Lerner SP, Wittmann DA, Latini DM, and Goltz HH. Examining sexual dysfunction in non-muscle-invasive bladder cancer: Results of cross-sectional mixed-methods research. Sex Med 2014;2:141-151.

Changes in sexual roles and quality of life for gay men after prostate cancer: challenges for sexual health providers.

INTRODUCTION: Gay men with prostate cancer (GMPCa) may have differential health-related quality of life (HRQOL) and sexual health outcomes than heterosexual men with prostate cancer (PCa), but existing information is based on clinical experience and small studies. AIMS: Our goals were to: (i) describe HRQOL and examine changes in sexual functioning and bother; (ii) explore the psychosocial aspects of sexual health after PCa; and (iii) examine whether there were significant differences on HRQOL and sexual behavior between GMPCa and published norms. METHODS: A convenience sample of GMPCa completed validated disease-specific and general measures of HRQOL, ejaculatory function and bother, fear of cancer recurrence, and satisfaction with prostate cancer care. Measures of self-efficacy for PCa management, illness intrusiveness, and disclosure of sexual orientation were also completed. Where possible, scores were compared against published norms. MAIN OUTCOME MEASURES: Main outcome measures were self-reported sexual functioning and bother on the Expanded Prostate Cancer Index. RESULTS: Compared with norms, GMPCa reported significantly worse functioning and more severe bother scores on urinary, bowel, hormonal symptom scales (Ps < 0.015-0.0001), worse mental health functioning (P < 0.0001), greater fear of cancer recurrence (P < 0.0001), and were more dissatisfied with their PCa medical care. However, GMPCa reported better sexual functioning scores (P < 0.002) compared with norms. Many of the observed differences met criteria for clinical significance. Physical functioning HRQOL and sexual bother scores were similar to that of published samples. GMPCa tended to be more "out" about their sexual orientation than other samples of gay men. CONCLUSIONS: GMPCa reported substantial changes in sexual functioning after PCa treatment. They also reported significantly worse disease-specific and general HRQOL, fear of recurrence, and were less satisfied with their medical care than other published PCa samples. Sexual health providers must have an awareness of the unique functional and HRQOL differences between gay and heterosexual men with PCa.

Educational opportunities in bladder cancer: increasing cystoscopic adherence and the availability of smoking-cessation programs.

Cancer survivors who continue to smoke following diagnosis are at increased risk for recurrence. Yet, smoking prevalence among survivors is similar to the general population. Adherence to cystoscopic surveillance is an important disease-management strategy for non-muscle-invasive bladder cancer (NMIBC) survivors, but data from Surveillance, Epidemiology, and End Results program (SEER) suggest current adherence levels are insufficient to identify recurrences at critically early stages. This study was conducted to identify actionable targets for educational intervention to increase adherence to cystoscopic monitoring for disease recurrence or progression. NMIBC survivors (n = 109) completed telephone-based surveys. Adherence was determined by measuring time from diagnosis to interview date; cystoscopies received were then compared to American Urological Association (AUA) guidelines. Data were analyzed using non-parametric tests for univariate and logistic regression for multivariable analyses. Participants averaged 65 years (SD = 9.3) and were primarily white (95 %), male (75 %), married (75 %), and non-smokers (84 %). Eighty-three percent reported either Ta- or T1-stage bladder tumors. Forty-five percent met AUA guidelines for adherence. Compared to non-smokers, current smokers reported increased fear of recurrence and psychological distress (p < 0.05). In regression analyses, non-adherence was associated with smoking (OR = 33.91, p < 0.01), providing a behavioral marker to describe a survivor group with unmet needs that may contribute to low cystoscopic adherence. Research assessing survivorship needs and designing and evaluating educational programs for NMIBC survivors should be a high priority. Identifying unmet needs among NMIBC survivors and developing programs to address these needs may increase compliance with cystoscopic monitoring, improve outcomes, and enhance quality of life.

Symptom management strategies for men with early-stage prostate cancer: results from the Prostate Cancer Patient Education Program (PC PEP).

While the literature on prostate cancer health-related quality of life has grown extensively, little is known about symptom management strategies used by men to manage treatment-related side effects and the effectiveness of those strategies. We collected 628 symptom management reports from 98 men treated for localized prostate cancer. Participants were recruited from email lists and a prostate cancer clinic in Northern California. Data were collected using the Critical Incident Technique. Symptom management reports were assigned to categories of urinary, sexual, bowel, mental health, systemic, or "other." We calculated descriptive statistics by symptom type and management strategy effectiveness. The most common symptoms were urinary (26 %) and sexual (23 %). Participants' symptom management strategies varied widely, from medical and surgical interventions (20 %) to behavioral strategies (11 %) to diet and lifestyle interventions (12 %). The effectiveness of symptom management strategies varied, with sexual symptoms being managed effectively only 47 % of the time to mental health symptom management strategies considered effective 89 % of the time. Doing nothing was a commonly reported (15 %) response to symptoms and was effective only 14 % of the time. Men report the least effectiveness in symptom management for sexual dysfunction after prostate cancer treatment. Including men's experience with managing treatment side effects may be an important way to improve survivorship programs and make them more acceptable to men. More work is needed to find out why men frequently do nothing in response to symptoms when effective solutions exist and how providers can successfully engage such men.

Psychosocial aspects of active surveillance.

PURPOSE OF REVIEW: To summarize the literature on psychosocial responses to active surveillance as well as educational and support strategies to promote adherence. RECENT FINDINGS: There are two prevalent responses among men undergoing active surveillance; anxiety and uncertainty. The education of a patient about low-risk prostate cancer as well as the inquiry by the physician into patient's priorities and goals with respect to their prostate cancer diagnosis provide opportunities to facilitate a collaborative relationship between the physician and the patient. Supplemental support services for men undergoing active surveillance, including support groups and Internet-based interventions continue to be researched in relation to their role in promoting adherence to active surveillance. SUMMARY: Active surveillance continues to remain a highly valued management approach for men with early stage prostate cancer. However, it is suggested that the psychosocial burden of living with prostate cancer plays a substantial role in adherence to active surveillance and outcomes of men with the disease. Effective clinician education and counseling, as well as the referral for supplemental support services must be implemented and documented in future research studies and clinical practice.

Racial differences in sexual dysfunction among postdeployed Iraq and Afghanistan veterans.

This study examined the racial/ethnic differences in prevalence and risk factors of sexual dysfunction among postdeployed Iraqi/Afghanistan veterans. A total of 3,962 recently deployed veterans were recruited from Houston Veterans Affairs medical center. The authors examined sociodemographic, medical, mental-health, and lifestyle-related variables. Sexual dysfunction was diagnosed by ICD9-CM code and/or medicines prescribed for sexual dysfunction. Analyses included chi-square, analysis of variance, and multivariate logistic regression. Sexual dysfunction was observed 4.7% in Whites, 7.9% in African Americans, and 6.3% in Hispanics. Age, marital status, smoking, and hypertension were risk factors for Whites, whereas age, marital status, posttraumatic stress disorder and hypertension were significant for African Americans. For Hispanics, only age and posttraumatic stress disorder were significant. This study identified that risk factors of sexual dysfunction varied by race/ethnicity. All postdeployed veterans should be screened; and psychosocial support and educational materials should address race/ethnicity-specific risk factors.

Summary of the 6th Annual Bladder Cancer Think Tank: new directions in urologic research.

The 6th Annual Bladder Cancer Think Tank brought together a multidisciplinary group of clinicians, researchers, and representatives from the National Cancer Institute and Industry in an effort to advance bladder cancer research efforts. This year's meeting comprised panel discussions and research involving 5 separate working groups, including the Survivorship, Clinical Trials, Standardization of Care, Data Mining, and Translational Science working groups. In this manuscript, the accomplishments and objectives of the working groups are summarized. Notable efforts include: (1) the development of a survivorship care plan for early and late-stage bladder cancer; (2) the development of consensus criteria for eligibility and endpoints for bladder cancer clinical trials; (3) an improved understanding of current practice patterns regarding the use of perioperative chemotherapy in an effort to standardize care; (4) creation of a comprehensive handbook to assist researchers with developing bladder cancer databases; and (5) identification of response to therapy of high-grade non muscle invasive disease through a collaborative exchange of expertise and resources.

Racial/ethnic differences in upper-tract urothelial cancer.

OBJECTIVES: Information on clinical characteristics, pattern of initial treatment and survival in patient with upper-tract urothelial carcinomas (UTUC) is scarce. Our study examined the racial/ethnic differences in patients diagnosed with incident UTUC. DESIGN: Observational study. The data analyses included: proportion and ANOVA for categorical and continuous variables, respectively; Kaplan-Meier method for calculating overall survival; and Cox-proportional hazards models for obtaining adjusted hazard-ratios. SETTING: Regions of the Surveillance, Epidemiology and End Results (SEER). PATIENTS OR PARTICIPANTS: 16,702 incident UTUC patients identified from the SEER dataset 1988-2007 (14,192 White, 967 Hispanic, 718 African American and 825 Asian). INTERVENTIONS: None. MAIN OUTCOME MEASURES: Race/ethnicity-specific distributions of demographics, tumor characteristics, patterns of initial treatment, and survival. RESULTS: African American and Hispanic patients were diagnosed at a younger age than Whites and Asians (P = .001). Hispanics were more likely to be diagnosed with larger tumor size than Whites and Asians (P < .0001). Asians were more likely to be diagnosed with advanced stage and higher tumor grade. Cox-regression revealed that Whites and Asians were significantly less likely to die after UTUC diagnosis than African Americans (HR = .78, 95% Cl = .67-.91 and HR = .75, 95% CI = .61-.91, respectively; all P = < .01). CONCLUSIONS: Our study found that Asians had worse tumor characteristics at the initial presentation than the other groups in this study, but that their risk of dying was lower. Further research is needed to include a larger number of Asian patients to examine subgroup differences and to confirm the paradoxical finding of higher survival with poor clinical characteristics.

Cancer perceptions: implications from the 2007 Health Information National Trends Survey.

INTRODUCTION: Research has demonstrated associations between sociodemographic characteristics and illness perceptions; however, the impact of cancer exposure through personal or family diagnoses is not well-studied. The purposes of this study were to examine different cancer beliefs and disparities in cancer beliefs across groups of individuals with distinct cancer histories and to identify whether cancer history predicts a set of cancer beliefs. METHODS: Using Leventhal's Common Sense Model and data from the 2007 Health Information National Trends Survey (N = 7,172), we constructed multivariable logistic regression models to evaluate the effect of different stimuli, including cancer experience on cancer perceptions (e.g., prevention, causation, outcome, worry). RESULTS: Findings indicated significant associations between cancer history and cancer perceptions. Individuals with family and personal cancer histories were more likely than individuals without any cancer history to worry about getting cancer (OR = 3.55, 95 %CI = 2.53-4.99), agree they will develop cancer in the future (OR = 8.81, 95 %CI = 6.12-12.67) and disagree that cancer is most often caused by a person's behavior or lifestyle (OR = 1.24, 95 %CI = 1.01-1.52). CONCLUSIONS: Cancer history affects perceptions throughout the cancer continuum. Additionally, cancer history may influence coping behaviors and outcomes. Cancer education and survivorship programs should assess important variables such as cancer history to more effectively tailor services and monitor evolving needs throughout cancer care. IMPLICATIONS FOR CANCER SURVIVORS: Integrating cancer history information into patient education programs tailored to an individual's needs may better empower survivors and their family members to effectively promote informed decision-making about screening and preventive health behaviors, manage cancer worry, and enhance quality of life.

Patient resources available to bladder cancer patients: a pilot study of healthcare providers.

OBJECTIVE: To survey thought leaders attending an annual bladder cancer conference about resources available to survivors at, primarily, large academic centers treating a high volume of patients. Bladder cancer is a disease with high treatment burden. Support groups and survivorship programs are effective at managing physical and psychosocial impairments experienced by patients. The Institute of Medicine recommends increased resources for cancer survivorship, but no description of current resources exists for bladder cancer patients. METHODS: Preceding the 4th annual Bladder Cancer Think Tank meeting in August 2009, we carried out an Internet-based survey of registrants that queried respondents about institutional resources and support systems devoted to bladder cancer survivors. Data were collected using SurveyMonkey.com, and descriptive statistics were computed. RESULTS: A total of 43 eligible respondents included urologists (77%), medical oncologists (16%), and other physicians or health professionals (7%). Physician respondents represented 22 academic centers and 2 private groups. Although 63% of respondent institutions had a National Cancer Institute designation, only 33% had an active bladder cancer support group. Survivorship clinics were available in 29% of institutions, and peer support networks, community resources for education, and patient navigation were available in 58%, 13%, and 25% of respondent institutions, respectively. CONCLUSIONS: Resources for bladder cancer survivors vary widely and are lacking at several academic centers with high-volume bladder cancer populations. Bladder cancer providers are often unaware of available institutional resources for patients. Urologists need to advocate for additional survivor resources and partner with other disciplines to provide appropriate care.