National audit of patient reported experience of radical cystectomy for bladder cancer pathways.

Objective: The objective of this study was to measure and describe the national patient experience of radical cystectomy (RC) pathways in the UK using the validated Cystectomy-Pathway Assessment Tool (C-PAT). Patients and Methods: A cohort of 1081 patients who underwent RC for bladder cancer, between 1 January 2021 and 31 July 2022 at 33 UK cystectomy centres, returned completed C-PAT responses. SPSS was employed for data summary statistics, including median, interquartile range, Mann Whitney U test or Chi-square test with a 95% confidence interval to assess statistical significance between potentially associated variables. Open-text responses in the C-PAT tool were analysed and coded using NVivo software. Results: In this cohort, the greatest perceived delay in the RC pathway, reported by 19% of patients (n = 208), was at the GP consultation to first hospital referral stage with suspected bladder cancer. Around 10% of patients perceived delays at each of the other stages in their pathway. Cancer nurse specialist (CNS) contact was strongly associated with an improved patient experience (p < 0.001); however, 9.5% of patients reported that they were not assigned a cancer nurse specialist in their pathway. Overall, 96% (n = 1028) reported their experience of RC pathway care to be good or excellent. There were no significant differences in reported patient experience found between cystectomy centres. Conclusion: This audit demonstrates the feasibility of measuring patient experience of RC pathways at scale. The C-PAT tool demonstrated utility in identifying specific pathway areas for quality improvement. Overall UK patients report a high quality pathway experience. A focus on improving the referral pathway between primary and secondary care is necessary.

Female sexual function in bladder cancer: A review of the evidence.

Background: Bladder cancer (BC) treatments are known to be invasive; nevertheless, research into the long-term effects is limited and in the context of sexual function often male focussed. Female sexual dysfunction (FSD) has been reported in up to 75% of female patients. This systematic scoping review examines the literature on sexual consequences of BC in female patients. Objective: This study aimed to systematically evaluate the evidence on female sexual function in BC to identify areas of unmet need and research priorities. Evidence Acquisition: We performed a critical review of PubMed, PsychMed, CINAHL, MEDLINE and the Cochrane Library in March 2020 according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) extension for Scoping Reviews statement following Levac et al. methodology. Identified reports were reviewed according to the Critical Appraisal Skills Programme (CASP) criteria. 45 publications were included. Evidence Synthesis: There was an inconsistent use of patient-reported outcome measures (PROMs), with commonly used PROMs having a narrow symptom focus. However, common symptoms emerged: loss of desire, orgasmic disorders, vaginal dryness, dyspareunia, difficult intromission, reduced clitoral sensation, psychological concerns related to diagnosis, fear of contamination and body image. Sexual activity was reduced in most groups, despite women expressing a motivation to retain sexual function. The degree of symptom distress associated with FSD is underreported. Evidence emerged regarding a gap for women in clinician counselling and follow-up. Conclusions: The patient's perspective of FSD in BC patients is poorly understood and under-addressed in clinical practice. There have been very few qualitative studies of FSD in BC. Any intervention designed to address the problem must start with greater understanding of both the patients' and clinicians' perspective. Lay Summary: We examined the evidence on sexual consequences of BC in women. It is apparent that despite common themes of sexual dysfunction emerging, the problem is poorly understood and addressed in clinical practice.

Designing a Pragmatic Intervention to Help Improve the Bladder Cancer Patient Experience.

Bladder cancer (BC) is the 10th most common malignancy worldwide and the patient experience is found to be worse than that for patients diagnosed with other cancer types. We aimed to develop a wellbeing intervention to help improve the bladder cancer patient experience by ameliorating their health-related Quality of Life (HRQoL). We followed the 3 phases of the modified Medical Research Council (MRC) Framework for development of complex interventions. Following a systematic review of the literature on mental, sexual, and physical wellbeing, we conducted discussion groups with patients and healthcare professionals on these 3 themes. A consultation phase was then conducted with all relevant stakeholders to co-design a wellbeing intervention as part of a feasibility study. A pragmatic wellbeing feasibility trial was designed based on the hypothesis that a wellbeing program will increase patient awareness and attendance to services available to them and will better support their needs to improve HRQoL. The primary feasibility endpoints are patient attendance to the services offered and changes in HRQoL. The principle of patient centered care has strengthened the commitment to provide a holistic approach to support BC patients. In this study, we developed a wellbeing intervention in collaboration with patients and healthcare professionals to meet an unmet need in terms of the BC patient experience.