Choice of urinary diversion after radical cystectomy : a UK perspective

Abstract

Introduction, Aim and Objectives - The central aim of Shared Decision Making (SDM) is to improve the quality of healthcare decisions made, mainly through enhanced collaboration between patients and healthcare professionals. The benefits of applying SDM are particularly pronounced for healthcare choices which are preference-sensitive. Certain types of bladder cancer can be cured by surgical removal of the bladder (radical cystectomy), necessitating diversion of urine (urinary diversion) either via a small bowel segment of an abdominal wall stoma (ileal conduit) or into a substitute bladder constructed from bowels (orthotopic neobladder). The latter is the less established urinary diversion technique but has been promoted by some surgeons as the new ‘gold standard’ for urinary diversion after radical cystectomy. Individual patient suitability for either of the two diversion options and their relative benefits and risks remain subjects of debate. The choice of urinary diversion after radical cystectomy has therefore become preference-sensitive, where the best choice is usually the one that is best aligned with patient preferences. The work presented in this thesis sought to understand how this choice was reached and reflect the findings against the ideals of SDM, within the current UK healthcare setting. The objectives were 1) To evaluate patient decisional needs in the decision making process and 2) To explore aspects considered most important to patients when they made their choice. Methodology and Methods - Mixed methodology was adopted and both quantitative and qualitative methods were employed. There were three interlinked studies 1) Secondary analysis of the joint Southwest Public Health Observatory – British Association of Urological Surgeons (SWPHO – BAUS) Cystectomy dataset 2) Needs assessment questionnaire survey of patients and clinicians 3) Qualitative semi-structured interviews with patients and clinicians to provide insights into current practice and to explore how SDM may benefit option selection. The three studies were analysed individually and the results were then cross-interpreted to generate overall findings. Main Findings - The statistically significant locality-based variation in use of neobladder in the UK NHS appears unwarranted, as it was unexplained by differences in demographic and clinical characteristics. Patient knowledge, expectation and support to make the choice in accordance to informed preferences were the three main decisional needs. There were instances where patients seemed misinformed about the diversion options, potentially due to the way they were counselled by their clinicians. There were also reported practices by clinicians and the use of certain information materials which appeared to help patients make a choice more aligned with the ideals of SDM. The distinct power imbalance between the consultant surgeons and patients appeared to be the main hindrance to implementing SDM with surgeons excluding or discouraging patients from the neobladder having considered relevant factors or simply their personal ‘feeling’ on an individual’s suitability. The sometimes conflicting inter-professional relationship between surgeons and specialist nurses, with misunderstanding of each other’s roles and information sharing techniques seemingly further hampered the application of SDM into this choice. Others such as family and former patients might help have roles to help patients make a more informed, value-based and preference-aligned choice. In the main, patients appeared to choose the diversion option which was anticipated to fit in best with their known normality; the aspects considered by patients before the choice was made included preservation of body image, daily activities and hobbies, minimisation operative risks, as well as avoidance of stigma from urinary leakage and toileting adaptations. Written additional information was valued by both patients and clinicians, and the written format for a future decision support for this choice was favoured. Clinicians and patients were uncertain of key differences of informed as opposed to shared decision making. Conclusions - This thesis highlights that enhancing patient knowledge, taking into account patients’ expectations as well as their values and preferences, and supporting patients to consider and voice their preferences are priorities in the individually appropriate choice of urinary diversion during cystectomy. Enhanced patient knowledge alone would be insufficient to allow SDM in diversion option selection to become a reality; the power imbalance between surgeons, patients and specialist nurses needs to be addressed. Design and use of a validated decision support package containing quality evidence on relative benefits and risks of each diversion option and features to elicit individual patient (and perhaps surgeon) preferences and values would represent a significant step towards realising SDM as the basis for choice of urinary diversion in radical cystectomy.