The Experiences of Illness in Korean Bladder Cancer Patients With Radical Cystectomy.

BACKGROUND: After radical cystectomy, many bladder cancer patients experience physical and psychological difficulties. For nurses, understanding the illness experiences should be the utmost priority. OBJECTIVE: The aim of this study was to comprehensively understand the experiences of illness among bladder cancer patients with radical cystectomy in Korea. METHODS: Purposive sampling was used in this qualitative study to recruit patients hospitalized with bladder cancer at the urology cancer center in South Korea. Data were collected through one-on-one in-depth interviews and analyzed using the thematic analysis of Braun and Clarke. RESULTS: Six themes were derived: "confusion with bodily changes," "loss of daily life as it was before radical cystectomy," "feeling daunted," "body acceptance," "adaptation," and "feeling grateful for life." These themes represent the emotional state and adaptation process after surgery. CONCLUSIONS: This study contributes to the understanding of the experience of illness in Korean adults experiencing bladder cancer. Whereas most previous research focuses on physical aspects, including treatment methods, this study focused on understanding the life and suffering after discharge of individuals. This study can help nurses to better understand the postoperative life of the patients. IMPLICATIONS FOR PRACTICE: This study can be a foundation for developing informational materials or intervention programs needed to solve the difficulties encountered during urostomy or neobladder self-care. Specifically, a strategy has to be devised to alleviate the pain of loss and to help patients who feel daunted and experience a negative body image.

Patient Reported Sexual Function Outcomes in Male Patients Following Open Radical Cystoprostatectomy and Urinary Diversion.

OBJECTIVE: To report sexual health outcomes in male patients undergoing open radical cystoprostatectomy using a validated questionnaire. MATERIALS AND METHODS: Beginning in 2017, male patients were asked to complete a validated questionnaire during scheduled post-cystectomy clinic visits that assessed sexual function using the 5 item International Index of Erectile Function (IIEF-5) and supplemental questions which evaluated libido, orgasm, partner interest, and adequacy of pre-operative counselling. Baseline data and functional outcomes were compared and multivariable analysis performed. RESULTS: A total of 134 patients who met inclusion criteria completed the questionnaire. Pre-operative IIEF-5 was available in 78 patients with a median score of 16 (IQR:5-23). In those patients, median age at cystectomy was 68.9 years (IQR:60.2-72.4) and median duration of follow-up was 17.3 months (IQR:6.3-28.7). Median IIEF-5 score at time of survey completion was 1 (IQR:1-11). Increasing age, shorter follow-up duration, insufficient counselling, and absence of partner interest were predictive of lower scores. Younger age, pre-operative erectile function, and neurovascular preservation were predictive of a higher IIEF-5 score on univariate and multivariate analysis. Median libido score was 2 "low" (IQR:1-3) and ability to orgasm was reported by 34 (43.6%) patients. Neurovascular preservation (OR:3.03 95% CI:1.10-8.26, P = .03) and sufficient preoperative counselling (OR:3.078 95% CI:1.17-8.098, P = .02) were associated with preserved ability to orgasm. Libido was influenced by partner interest (OR 11.7, 95% CI:3.793-6.14, P <.0001). CONCLUSION: Sexual dysfunction after radical cystoprostatectomy is prevalent with many contributing factors. As such, establishing appropriate expectations and goals during preoperative counseling, performing neurovascular preservation when appropriate, and readily identifying and treating dysfunction in follow-up may improve sexual recovery.

Ileal conduit or orthotopic neobladder: selection and contemporary patterns of use.

PURPOSE OF REVIEW: The orthotopic neobladder and ileal conduit are the two most commonly utilized urinary diversions among patients undergoing radical cystectomy. Although orthotopic diversion offers several advantages, only 20% of patients nationally receive this diversion, with decreasing utilization over time. The purpose of this article is to review advantages of each diversion type and considerations in patient selection, review trends in diversion utilization and perioperative and functional outcomes, and examine recent studies evaluating methods of optimizing diversion selection and patient satisfaction and outcomes. RECENT FINDINGS: Decreasing utilization of orthotopic diversion has coincided with the increasing utilization of minimally invasive surgical techniques. A multicentre robotic series demonstrated a higher incidence of high-grade complications with intracorporeal diversion, reflecting the learning-curve associated with this technique. Patient satisfaction with urinary diversion is associated with informed decision-making and goal alignment. Ongoing quality of life studies is aiming to identify predictors of patient satisfaction with the selected urinary diversion and may help guide patient counselling. SUMMARY: Given the potential advantages of orthotopic diversion, its decreasing use is a concerning trend. Elucidating patient goals and informed decision-making are critical to patient satisfaction. A patient-centred approach should be used when selecting the type of urinary diversion for a given patient.

The effect of multiple recruitment contacts on response rates and patterns of missing data in a survey of bladder cancer survivors 6 months after cystectomy.

PURPOSE: The Bladder Cancer Quality of Life Study collected detailed and sensitive patient-reported outcomes from bladder cancer survivors in the period after bladder removal surgery, when participation in survey research may present a burden. This paper describes the study recruitment methods and examines the response rates and patterns of missing data. METHODS: Detailed surveys focusing on quality of life, healthcare decision-making, and healthcare expenses were mailed to patients 5-7 months after cystectomy. We conducted up to 10 follow-up recruitment calls. We analyzed survey completion rates following each contact in relation to demographic and clinical characteristics, and patterns of missing data across survey content areas. RESULTS: The overall response rate was 71% (n = 269/379). This was consistent across patient clinical characteristics; response rates were significantly higher among patients over age 70 and significantly lower among racial and ethnic minority patients compared to non-Hispanic white patients. Each follow-up contact resulted in marginal survey completion rates of at least 10%. Rates of missing data were low across most content areas, even for potentially sensitive questions. Rates of missing data differed significantly by sex, age, and race/ethnicity. CONCLUSIONS: Despite the effort required to participate in research, this population of cancer survivors showed willingness to share detailed information about quality of life, health care decision-making, and expenses, soon after major cancer surgery. Additional contacts were effective at increasing participation. Response patterns differed by race/ethnicity and other demographic factors. Our data collection methods show that it is feasible to gather detailed patient-reported outcomes during this challenging period.

HRQOL related to urinary diversion in Radical Cystectomy: a systematic review of recent literature.

INTRODUCTION: The health-related QoL is a patient-centered evaluation covering several aspects. This evaluation seems to be particularly important in patients submitted to radical cystectomy (RC) and urinary diversion with ileal conduit (IC) or a neobladder (NB). OBJECTIVE: Review all recent data comparing QoL outcomes after radical cystectomy with NB and IC diversions. EVIDENCE ACQUISITION: A systematic search in PubMed/Medline, Embase, and Cochrane databases was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) statement in December 2018. All articles published from January 01, 2012 to December 31, 2018, were included. A study was considered relevant if it compared QoL outcomes using validated questionnaires (EORTC QLQ C30, FACT-G, FACT-BL, FACT-VCI, and BCI). EVIDENCE SYNTHESIS: In 11 included studies, a total of 1389 participants were accounted (730 NB and 659 IC cases). The studies were conducted in 8 different countries, two were prospective, and none was randomized. There were two studies favoring results with a neobladder, 3 with incontinent diversion and 6 with no differences. The EORTC-QLQ-C30 was the most used instrument (5 studies) followed by FACT VCI and BCI (3 studies each). Given the heterogeneity of data and lack of prospective studies, a meta-analysis was not performed. CONCLUSION: No superiority of one urinary diversion was characterized. It seems that the choice must be individualized with an extensive preoperative orientation of the patient and their relatives. That will probably infl uence how the patient accepts the new condition.

HRQOL related to urinary diversion in Radical Cystectomy: a systematic review of recent literature

ABSTRACT Introduction: The health-related QoL is a patient-centered evaluation covering several aspects. This evaluation seems to be particularly important in patients submitted to radical cystectomy (RC) and urinary diversion with ileal conduit (IC) or a neobladder (NB). Objective: Review all recent data comparing QoL outcomes after radical cystectomy with NB and IC diversions. Evidence Acquisition: A systematic search in PubMed/Medline, Embase, and Cochrane databases was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) statement in December 2018. All articles published from January 01, 2012 to December 31, 2018, were included. A study was considered relevant if it compared QoL outcomes using validated questionnaires (EORTC QLQ C30, FACT-G, FACT-BL, FACT-VCI, and BCI). Evidence Synthesis: In 11 included studies, a total of 1389 participants were accounted (730 NB and 659 IC cases). The studies were conducted in 8 different countries, two were prospective, and none was randomized. There were two studies favoring results with a neobladder, 3 with incontinent diversion and 6 with no differences. The EORTC-QLQ-C30 was the most used instrument (5 studies) followed by FACT VCI and BCI (3 studies each). Given the heterogeneity of data and lack of prospective studies, a meta-analysis was not performed. Conclusion: No superiority of one urinary diversion was characterized. It seems that the choice must be individualized with an extensive preoperative orientation of the patient and their relatives. That will probably influence how the patient accepts the new condition.

Development and Acceptability Testing of a Patient Decision Aid for Urinary Diversion with Radical Cystectomy.

PURPOSE: The choice of urinary diversion at cystectomy is a life altering decision. Patient decision aids are clinical tools that promote shared decision making by providing information about management options and helping patients communicate their values. We sought to develop and evaluate a patient decision aid for individuals undergoing cystectomy with urinary diversion. MATERIALS AND METHODS: We used the IPDAS (International Patient Decision Aids Standards) to guide a systematic development process. A literature review was performed to determine urinary diversion options and the incidence of outcomes. We created a prototype using the Ottawa Decision Support Framework. A 10-question survey was used to assess patient decision aid acceptability among patients, allied health professionals and urologists. The primary outcome was acceptability of the patient decision aid. RESULTS: Ileal conduit and orthotopic neobladder were included as primary urinary diversion options because they had the most evidence and are most commonly performed. Continent cutaneous diversion was identified as an alternative option. Outcomes specific to ileal conduit were stomal stenosis and parastomal hernia. Outcomes specific to neobladder were daytime and nighttime urinary incontinence and urinary retention. Acceptability testing was completed by 8 urologists, 9 patients and 1 advanced practice nurse. Of the respondents 94% reported that the language was appropriate, 94% reported that the length was adequate and 83% reported that option presentation was balanced. The patient decision aid met all 6 IPDAS defining criteria, all 6 certification criteria and 21 of 23 quality criteria. CONCLUSIONS: We created a novel patient decision aid to improve the quality of decisions made by patients when deciding among urinary diversion options. Effectiveness testing will be performed prospectively.

Leveraging Latent Dirichlet Allocation in processing free-text personal goals among patients undergoing bladder cancer surgery.

PURPOSE: As we begin to leverage Big Data in health care settings and particularly in assessing patient-reported outcomes, there is a need for novel analytics to address unique challenges. One such challenge is in coding transcribed interview data, typically free-text entries of statements made during a face-to-face interview. Latent Dirichlet Allocation (LDA) offers statistical rigor and consistency in automating the interpretation of patients' expressed concerns and coping strategies. METHODS: LDA was applied to interview data collected as part of a prospective, longitudinal study of QOL in N = 211 patients undergoing radical cystectomy and urinary diversion for bladder cancer. LDA analyzed personal goal statements to extract the latent topics and themes, stratified by time, and on things patients wanted to accomplish and prevent. Model comparison metrics determined the number of topics to extract. RESULTS: LDA extracted seven latent topics. Prior to surgery, patients' priorities were primarily in cancer surgery and recovery. Six months after the surgery, they were replaced by goals on regaining a sense of normalcy, to resume work, to enjoy life more fully, and to appreciate friends and family more. LDA model parameters showed changing priorities, e.g., immediate concerns on surgery and resuming employment decreased post-surgery and were replaced by concerns over cancer recurrence and a desire to remain healthy and strong. CONCLUSIONS: Novel Big Data analytics such as LDA offer the possibility of summarizing personal goals without the need for conventional fixed-length measures and resource-intensive qualitative data coding.

Massage and reflexology for post-operative cancer cystectomy patients: Evaluation of a pilot service.

BACKGROUND: and purpose: Radical cystectomy is a gold standard treatment for invasive bladder cancer. However the length of the operation is long and recovery is usually slow and painful. There is growing recognition of the importance of health related quality of life among patients undergoing invasive surgical procedures. In response, a massage and reflexology service was piloted and evaluated. MATERIALS AND METHODS: One hour of massage, reflexology or a combination of both was provided twice to 38 cystectomy patients by a trained therapist in their acute post-operative phase (day one and day three). Self-reported concerns, well-being and pain were measured before and immediately after the therapy. Pain was measured once more in the early evening of each therapy day. RESULTS: Self-reported concerns and pain were significantly reduced following the intervention on both days treatments were given. Pain was measured again on the evening of each of the intervention days, and this reduction was maintained on day one but not day three. Well-being scores were also significantly improved pre to post intervention on both day one and day three. Qualitative comments highlighted that this complementary therapy service was viewed both beneficial and relaxing. There were no significant differences between the different therapies used (massage, reflexology, or a combination of the two). CONCLUSION: The findings of this pilot evaluation very tentatively support the benefits of cancer cystectomy patients receiving massage and/or reflexology in their acute postoperative recovery period. There are many limitations to this evaluation. Further research utilising a randomised control methodology alongside medical, independent markers is warranted, and currently in development.

Understanding physical activity behavior in patients with bladder cancer before and after radical cystectomy: a qualitative interview study.

OBJECTIVE:: To explore the determinants of physical activity in patients with bladder cancer before and after radical cystectomy. DESIGN:: A qualitative research design using semi-structured face-to-face interviews. SETTING AND SUBJECTS:: A total of 30 interviews were conducted with people diagnosed with bladder cancer and treated with radical cystectomy at Ghent University Hospital. MAIN MEASURES:: The interviews were audiotaped and transcribed verbatim. Framework analysis with constant comparison between and within interviews was applied until final topics were derived from interpreting the data. RESULTS:: Physical activity behavior in patients with bladder cancer is determined multifactorial with condition-related (e.g. urinary symptoms, comorbidities), therapy-related (e.g. fatigue, diarrhea), patient-related (e.g. outcome expectations, coping skills, definitions of physical activity), social/economic-related (e.g. social support, attractive environment) and health system-related (e.g. physicians' advice, information) factors. CONCLUSION:: The results of this study can guide the development of theory-based behavior change interventions to increase physical activity in bladder cancer patients.

Evaluation of the relationship between compliance with the follow-up and treatment protocol and health literacy in bladder tumor patients.

Objective: To investigate the relationship between the compliance of bladder cancer patients with cystoscopic follow-up and the treatment protocol, and their health literacy. Methods: Patients who underwent transurethral resection surgery for bladder tumor were found to have non-muscular invasive bladder carcinoma on pathology examination and then underwent cystoscopic follow-up for 1 year or more were included in the study. Cystoscopic follow-up was recommended to the low- and high-risk groups in terms of progression and recurrence. The patients were evaluated with the Health Literacy Survey-European Union scale. Results: The mean age of the patients was 67.13 ± 10.77 years. The treatment continuity rate was 80.50% (n = 33) in the adequate health literacy group (n = 41) and significantly higher than the 56.50% (n = 48) rate in the inadequate health literacy group (n = 85) (p = .008). The health literacy results revealed that the health promotion and general index score was higher in the group of patients under the age of 65. Conclusions: Adequate health literacy in bladder cancer patients is associated with better compliance with the treatment protocol. Young patients show better compliance with the follow-up protocol recommended by the physician. Increasing the follow-up protocol compliance of elderly patients with inadequate health literacy is necessary.

Variability and interpretation of communication taxonomy during robot-assisted surgery: do we all speak the same language?

OBJECTIVE: To investigate and analyse the different ways surgeons communicate with bedside assistants during robot-assisted surgery (RAS). METHODS: We retrospectively reviewed video and audio recordings of 26 RAS procedures (23 prostatectomies and three cystectomies). Three cameras and eight lapel microphones were used to record the operating theatre environment. We identified five common tasks and categorized them into 'specific', 'non-specific' and 'unclear' categories. We also determined the frequency, time to execute the task, inconveniences and acknowledgements associated with each category. The most efficient category was the one that took the shortest duration to accomplish and was associated with the fewest inconveniences. RESULTS: A total of 1 000 requests were made by three surgeons for six bedside assistants by three surgeons. The five identified tasks were: instrument change; clipping; suction; irrigation; and retraction. For instrument change, non-specific requests were the most frequent compared with the other categories (77% vs 18% vs 5%; P < 0.001). For suction, specific requests were the most frequently used of the three categories (73% vs 27% vs 0%; P < 0.001) and this task was associated with the fewest inconveniences (38% vs 62%; P = 0.01). For clipping, irrigation and retraction, both specific and non-specific requests were similar in terms of their frequency, action time and inconveniences. Comparing complete vs incomplete requests, incomplete requests had significantly shorter median action time (5 vs 8 s; P < 0.001) but did not significantly differ in terms of inconveniences and acknowledgement. CONCLUSION: To our knowledge, this is the first study to provide a detailed analysis of communication during RAS. It lays a foundation for standardized taxonomy to improve communication, surgical efficiency and patient safety.

A systematic review of exercise and psychosocial rehabilitation interventions to improve health-related outcomes in patients with bladder cancer undergoing radical cystectomy.

OBJECTIVE: Summarizing the evidence on the effects of pre- and postoperative exercise and psychosocial rehabilitation interventions on patient-reported outcomes (PROs) and physical fitness in bladder cancer patients undergoing radical cystectomy. DATA SOURCES: The Cochrane Central Register of Controlled Trials, MEDLINE, Embase, Web of Science and the Physiotherapy Evidence Database were searched independently by two authors from inception until 10 November 2017. Cited references of the studies and citing references retrieved via Web of Science were also checked. REVIEW METHODS: Randomized controlled trials (RCTs) and non-randomized studies assessing effects of exercise and psychosocial interventions in bladder cancer patients undergoing radical cystectomy were eligible. Primary outcome measures were PROs and physical fitness. Risk of bias was assessed using the Cochrane Collaboration tool and the Newcastle-Ottawa Scale. RESULTS: Five RCTs (three exercise and two psychosocial studies) and one non-randomized psychosocial study comprising 317 bladder cancer patients were included. Timing of the intervention was preoperative ( n = 2), postoperative ( n = 2) or both pre- and postoperative ( n = 2). Positive effects of exercise were found for physical fitness ( n = 3), some health-related quality-of-life (HRQoL) domains ( n = 2), personal activities in daily living ( n = 1) and muscle strength ( n = 1). Psychosocial interventions showed positive effects on anxiety ( n = 1), fatigue ( n = 1), depression ( n = 1), HRQoL ( n = 1) and posttraumatic growth ( n = 1). Quality assessment showed most shortcomings with sample sizes and strong heterogeneity was observed between studies. CONCLUSION: The evidence relating to the effects of exercise in bladder cancer is very limited and is even less for psychosocial interventions.

Comparative Evaluation of Bladder-specific Health-related Quality of Life Instruments for Bladder Cancer.

OBJECTIVE: To compare 2 bladder cancer-specific health-related quality of life instruments (HRQOL) in the same patient population. Previous HRQOL studies in cystectomy patients have yielded conflicting results. Using a cross-sectional study design, we examined the only 2 validated bladder cancer-specific (HRQOL) measures. METHODS: Of the 256 patients who had undergone radical cystectomy from 2009 to 2014, 131 met both inclusion and exclusion criteria. The Functional Assessment Cancer Therapy-Vanderbilt Cystectomy Index (FACT-VCI) and Bladder Cancer Index (BCI) were mailed to these patients. Overall HRQOL and individual domain scores were compared between the 2 instruments with a Spearman correlation coefficient. HRQOL scores were compared by urinary diversion type as well using a non-parametric Wilcoxon rank sum test. RESULTS: Our study had a response rate of 49% from 31 ileal conduit (IC) and 33 orthotopic neobladder patients. Overall, there was a moderate correlation between the FACT-VCI and BCI surveys (r = 0.57, P <.001). Responses on the BCI domains were strongly correlated with responses on the bladder cancer-specific domain of the FACT-VCI (r = 0.74, P <.001). The BCI scores for urinary function were significantly better in the IC group (P = .002). No significant difference was found between IC and orthotopic neobladder using the FACT-VCI. CONCLUSION: The FACT-VCI and BCI instruments correlate well within the same patient cohort but capture different aspects of HRQOL. By focusing exclusively on bladder cancer treatment concerns, the BCI appears to be a better tool for assessing and counseling patients on expected treatment-specific changes after diversion type.

Efficacy of preoperative uro-stoma education on self-efficacy after Radical Cystectomy; secondary outcome of a prospective randomized controlled trial.

PURPOSE: Radical Cystectomy with a creation of an uro-stoma is first line treatment in advanced bladder-cancer. Enhancing or maintaining an individual's condition, skills and physical wellbeing before surgery has been defined as prehabilitation. Whether preoperative stoma-education is an effective element in prehabilitation is yet to be documented. In a prospective randomized controlled design (RCT) the aim was to investigate the efficacy of a standardised preoperative stoma-education program on an individual's ability to independently change a stoma-appliance. METHODS: A parent RCT-study investigated the efficacy of a multidisciplinary rehabilitation program on length of stay following cystectomy. A total of 107 patients were included in the intension-to-treat-population. Preoperatively, the intervention-group was instructed to a standardized stoma-education program consisting of areas recognized necessary to change a stoma appliance. The Urostomy Education Scale was used to measure stoma self-care at day 35, 120 and 365 postoperatively. Efficacy was expressed as a positive difference in UES-score between treatment-groups. RESULTS: A significant difference in mean score was found in the intervention group compared to standard of 2.7 (95% CI: 0.9; 4.5), 4.3 (95% CI: 2.1; 6.5) and 5.1 (95% CI: 2.3; 7.8) at day 35, 120 and 365 postoperatively. CONCLUSIONS: For the first time a study in a RCT-design have reported a positive efficacy of a short-term preoperative stoma intervention. Preoperative stoma-education is an effective intervention and adds to the evidence base of prehabilitation. Further RCT-studies powered with self-efficacy as the primer outcome are requested.

Long-term Health-related Quality of Life Outcomes Following Radical Cystectomy.

OBJECTIVE: To evaluate the long-term (>5 years) health-related quality of life (HRQOL) outcomes following radical cystectomy, comparing Indiana pouch (IP), neobladder (NB), and ileal conduit (IC). MATERIALS AND METHODS: The departmental radical cystectomy database was queried to identify patients who underwent radical cystectomy and urinary diversion for bladder cancer between 1991 and 2009 and had not died. Three hundred patients were identified and sent the validated Bladder Cancer Index instrument. RESULTS: A total of 128 (43%) patients completed the survey. When adjusted for gender, age at surgery, surgeon, and time since surgery, IC and IP patients had significantly better urinary function than NB patients (P = .0013). Sexual bother was less in NB than IP (P = .0387). Among men ≥65 years of age, IC patients had significantly better urinary function (P = .0376) than NB patients (91.6 vs 49.4, respectively). Among men <65 years of age, IC and IP patients (76.0 and 82.8, respectively) had significantly better urinary function than NB patients (50.7) (P = .0199). Among women greater than 65 years, bowel bother was significantly better (P = .0095) for IC patients than IP patients (44.8 vs 69.5, respectively). CONCLUSION: Urinary diversion type after radical cystectomy affects HRQOL differently in long-term survivors. Age and gender at surgery influenced HRQOL based on diversion procedure. Urinary function but not urinary bother was significantly better in IC and IP compared to NB diversions. Prospective longitudinal studies using validated HRQOL tools will further help guide preoperative diversion choice decisions between patient and surgeon.

Idiographic quality of life assessment before radical cystectomy.

BACKGROUND: We sought to determine if idiographic, or self-defined, measures added to our understanding of patients with bladder cancer's quality of life (QOL) prior to radical cystectomy (RC). We tested whether idiographic measures increased prediction of global QOL beyond standard (nomothetic) measures of QOL components. METHODS: We administered the European Organization for Research and Treatment of Cancer Quality of Life Questionnaires (QLQ)-C30 and QLQ-BLM30, and our own idiographic Quality of Life Appraisal Profile prior to RC. Idiographic measures included number of goal statements, distance from goal attainment, and ability to complete goal attainment activities. Multivariate linear regression was used to predict measures of global QOL and related constructs of life satisfaction and mental health. RESULTS: Two hundred fiftheen patients reported a median of 8 (interquartile range [IQR] 6, 11) goals and half had an average goal attainment rating above 6.9 out of 10 (IQR 5.5, 8.2). On multivariable analysis, QLQ-C30 role functioning and QLQ-BLM30 future perspective explained 15.7% of the variability in preoperative global QOL. Including goal attainment and activity difficulty explained an additional 12% of global QOL variance. Smaller gains were seen on measures of global health, life satisfaction, mental health, and activity, suggesting that idiographic measures capture aspects of QOL distinct from health and functional status defined by nomothetic scales. CONCLUSIONS: Idiographic assessment of QOL added to prediction of global QOL above and beyond health-related components measured using nomothetic instruments. This self-defined information may be valuable in communicating with cancer patients about their QOL. 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.

Influence and Impact of Cognitive Trajectories on Outcome in Patients Undergoing Radical Cystectomy: An Observational Study.

OBJECTIVE: To evaluate cognitive trajectories after radical cystectomy and their impact on surgical outcomes, including urinary continence. MATERIALS AND METHODS: Ninety patients received cognitive testing using the Mini Mental State Examination before open radical cystectomy as well as 3 days and 2 weeks after surgery. Based on the Mini Mental State Examination changes ≥3 points between the three time points, five cognitive trajectories emerged (stable cognition, persistent or transient deterioration, or persistent or transient improvement). Surgical outcomes were assessed 90 days, 6 months, and 1 year postoperatively. RESULTS: Mean age was 67.9 ± 9.3 years (range 40-88 years). Sixty-six patients (73.3%) had stable cognition, 9 patients (10.0%) had persistent deterioration and 7 patients (7.8%) had transient deterioration, 5 patients (5.6%) had persistent improvement and 3 patients (3.3%) had transient improvement. An impaired preoperative cognition was the only significant risk factor of short-term cognitive deterioration (odds ratio adjusted for age and sex 9.4, 95% confidence interval 1.6-56.5, P = .014). Cognition showed no associations with 1-year mortality, 90-day complication rate, cancer progression, or duration of in-hospital stay. Patients with transient or persistent cognitive deterioration had an increased risk for nighttime incontinence (odds ratio adjusted for age and sex 5.1, 95% confidence interval 1.1-22.4, P = .032). CONCLUSION: In this study, the majority of patients showed stable cognition after major abdominopelvic surgery. Cognitive deterioration occurred in a small subgroup of patients, and an impaired preoperative cognition was the only significant risk factor. Postoperative cognitive deterioration was associated with nighttime incontinence.