Patient-reported long term complications after ileal conduit surgery and the implementation of a surveillance protocol

Abstract

Introduction and aim of the study Ileal conduit(IC) is the most frequent urinary diversion following radical cystectomy. Reports highlighted high rates of long term complications but the best schedule of surveillance remains undecided. The main aim of this study to investigate IC patients’ experience after surgery and to explore current practice of surveillance and investigate stakeholders’ views about alternative models. Materials and Methods This study was formed of two parts. Part A: 2000 IC patients were invited to complete a postal questionnaire. The questionnaire explored patients’ experience of complications and their views of follow up. Statistical analysis was conducted using Stata®14 software to identify association between reporting complications, patients’ satisfaction or views and patient characteristics. Part B: A multicentre qualitative study, using semi-structured interviews among health professionals involved in IC care was conducted. Interviews explored participants’ views of current practice and best surveillance model. Following thematic analysis, the framework of the NPT was used to analyse the data. Results Part A: 1092 completed questionnaires were analysed (response rate= 60%). 88% of respondents reported ≥1 complication, and 45% ≥1 frequent complication. UTIs, hernia and appliances problems are the most reported ones. Multivariable logistic regression showed female gender, age < 60 years, benign indication for surgery and difficult access to stoma nurse were associated with reporting complications. Of the 44% who felt GP follow up is inappropriate; lack of experience was the main cause. Part B: 17 interviews were conducted with different types of health professionals at three centres. Participants described good understanding of surveillance scope and value. They highlighted the need for change due to lack of guidelines and service workload. The stoma nurse role was seen as pivotal in making surveillance workable. There was a lack of agreement over surveillance length. Participants raised concern regarding GPs willingness to participate and about lack of resources. Conclusion The high and cumulative incidence of IC related complications suggest the development of a standardised, evidence based long term surveillance protocol. A shared care community based nurse led scheme could be a suitable model.