Patient Compliance in Assessing Electronic Patient-Reported Outcome Measures after Urologic Surgery.

INTRODUCTION: This study aimed to assess patient compliance with a newly established electronic patient-reported outcome measure (ePROM) system after urologic surgery and to identify influencing factors. METHODS: Digital surveys were provided to patients undergoing cystectomy, radical or partial nephrectomy, or transurethral resection of bladder tumor via a newly established ePROM system. Participants received a baseline survey preoperatively and several follow-up surveys postoperatively. Multivariable regression analysis was performed to identify factors predicting compliance. RESULTS: Of N = 435 eligible patients, n = 338 completed the baseline survey (78.0%). Patients who did not participate were significantly more likely male (p = 0.004) and older than 70 years (p = 0.005). Overall, 206/337 patients (61.3%) completed the survey at 1-month, 167/312 (53.5%) at 3-month, and 142/276 (51.4%) at 6-month follow-up. Lower baseline quality of life (odds ratio: 2.27; p = 0.004) was a significant predictor for dropout at 1-month follow-up. Low educational level was significantly associated with low compliance at 3- (OR: 1.92; p = 0.01) and 6-month follow-up (OR: 2.88; p < 0.001). CONCLUSION: Acceptable compliance rates can be achieved with ePROMs following urologic surgery. Several factors influence compliance and should be considered when setting-up ePROM surveys.

Validation of a German translation of the CARE questionnaire and its implementation as electronic PROM to assess patient-reported postoperative convalescence and recovery after major urological surgery.

PURPOSE: To validate a German translation of the convalescence and recovery evaluation (CARE) as an electronic patient-reported outcome measure (ePROM) and use it to assess recovery after major urological surgery. METHODS: The CARE questionnaire was provided to patients scheduled for major urological surgery preoperatively, at discharge and 6 weeks postoperatively, using an ePROM system. Cronbach's alpha, inter-scale correlations and confirmatory factor analysis (CFA) were used to validate the translation. Mixed linear regression models were used to identify factors influencing CARE results, and a multivariable logistic regression analysis was done to determine the predictive value of CARE results on quality of life (QoL). RESULTS: A total of 283 patients undergoing prostatectomy (n = 146, 51%), partial/radical nephrectomy (n = 70, 25%) or cystectomy (n = 67, 24%) responded to the survey. Internal consistency was high (α = 0.649-0.920) and the CFA showed a factor loading > 0.5 in 17/27 items. Significant main effects were found for the time of survey and type of surgery, while a time by type interaction was only found for the gastrointestinal subscale ([Formula: see text] = 30.37, p < 0.0001) and the total CARE score (TCS) ([Formula: see text] = 13.47, p = 0.009) for cystectomy patients, meaning a greater score decrease at discharge and lower level of recovery at follow-up. Complications demonstrated a significant negative effect on the TCS ([Formula: see text] = 8.61, p = 0.014). A high TCS at discharge was an independent predictor of a high QLQ-C30 QoL score at follow-up (OR = 5.26, 95%-CI 1.42-19.37, p = 0.013). CONCLUSION: This German translation of the CARE can serve as a valid ePROM to measure recovery and predict QoL after major urological surgery.

Decision Aids for Shared Decision-making in Uro-oncology: A Systematic Review.

CONTEXT: Decision aids (DAs) aim to support patients in the process of shared decision-making for complex treatment decisions. To improve patient-centered care in uro-oncology, it is essential to evaluate the availability and quality of existing DAs. OBJECTIVE: To assess the quality of existing DAs for patients across the most prevalent uro-oncological entities. EVIDENCE ACQUISITION: This study was conducted in accordance with the Preferred Reporting Items for Systematic Review and Meta-analyses (PRISMA) guidelines. A systematic literature search (MedLine, Cochrane Library, Web of Science Core Collection, and CCMed) was conducted to identify DAs for treatment decisions for patients with prostate, renal, or bladder cancer. All studies reporting on the development or evaluation of DAs were included. The DAs were examined based on the International Patient Decision Aid Standards (IPDAS) and the evaluation studies were compared in accordance with Standards for Universal reporting of a patient Decision Aid Evaluations (SUNDAE). EVIDENCE SYNTHESIS: The literature search identified 1995 potentially relevant publications. Thirty-two studies reporting on 25 DAs met the inclusion criteria. Twenty-two DAs address prostate cancer, two renal tumor, and one bladder cancer. In the majority of DAs (n = 20), patients can enter individual data. A few (n = 6) DAs allow for personalization using a risk-adapted presentation of treatment options. The percentage of IPDAS criteria met in DAs ranged between 50% and 100% (median 87.5%), and the studies' adherence to the SUNDAE checklist was between 62% and 96% (median 86.6%). Evaluation studies suggest that interventions are likely efficacious. However, a preliminary meta-analysis revealed no significant difference between "DA" and "usual care" for decisional conflict or decisional regret. CONCLUSIONS: This review highlights that a number of well-developed DAs exist in urology. However, there is a need for specific instruments targeting kidney and bladder cancer. Personalization of tools and adherence to international standards of DAs should be further improved. PATIENT SUMMARY: The majority of uro-oncological decision aids target prostate cancer, whereas fewer address kidney or bladder cancer. The quality of the existing instruments is high, but can be increased further to better address specific needs of individual patients.

Predicting decisional conflict: Anxiety and depression in shared decision making.

OBJECTIVES: Emotional distress can be a potential barrier to shared decision making (SDM), yet affect is typically not systematically assessed in medical consultation. We examined whether urological patients report anxiety or depression prior to a consultation and if emotional distress predicts decisional conflict thereafter. METHODS: We recruited a large sample of urological outpatients (N = 397) with a range of different diagnoses (42 % oncological). Prior to a medical consultation, patients filled in questionnaires, including the Hospital Anxiety and Depression Scale. After the consultation, patients completed the Decisional Conflict Scale. We scored the rate of anxiety and depression in our sample and conducted multiple regression analysis to examine if emotional distress before the consultation predicts decisional conflict thereafter. RESULTS: About a quarter of patients reported values at or above cut-off for clinically relevant emotional distress. Emotional distress significantly predicted a higher degree of decisional conflict. There were no differences in emotional distress between patients with and without uro-oncological diagnosis. CONCLUSIONS: Emotional distress is common in urology patients - oncological as well as non-oncological. It predicts decisional conflict after physician consultation. PRACTICE IMPLICATIONS: Emotional distress should be systematically assessed in clinical consultations. This may improve the process and outcome of SDM.