Patient-centered care aims to align treatment with patient goals, especially when treatment options have equivalent clinical outcomes. For surgeries with lasting impacts, that alignment is critical. No psychometrically tested preference-elicitation measures exist to support patients with bladder cancer undergoing cystectomy, who can often choose between ileal conduit and neobladder diversions. Our study created a scale to measure how patients' goals align with each type of urinary diversion and their associated surgical outcomes.
We conducted formative research through focus groups and clinician outreach to adapt a goal dissonance measure. We mailed a survey to adult Kaiser Permanente members who underwent cystectomy for bladder cancer between January 2013 and June 2015. Eligible patients were identified through electronic health records and chart review. Surveys were mailed 5-7 months post-surgery. We administered our 10-item, decision dissonance scale along with other decision-making measures. We explored goal alignment as well as dissonance. Psychometric analysis included factor analysis, evaluation of scale scores between surgery groups, and evaluation with other decision-making scores.
We identified ten goals associated with ileal conduit or neobladder diversion. Using survey data (N=215), our scale differentiated patient goals associated with each diversion choice. On average, patients with a neobladder strongly valued neobladder-aligned goals such as maintaining body integrity and volitional voiding through the urethra. Patients with an ileal conduit had neutral values, on average, across all goals. Our measure lays the foundation for a simple value elicitation approach that could facilitate shared decision-making about urinary diversion choice.
The Journal of urology. 2019 Mar 05 [Epub ahead of print]
Michael C Leo, Scott M Gilbert, Christopher S Wendel, Robert S Krouse, Marcia Grant, Kim N Danforth, Marilyn L Kwan, Teresa N Harrison, Joanna E Bulkley, Carmit K McMullen
Kaiser Permanente Center for Health Research , Portland , OR., Moffitt Cancer Center and Research Institute , Tampa , FL., University of Arizona School of Medicine , Tucson , AZ., Cpl Michael J. Crescenz VA Medical Center; Department of Surgery, University of Pennsylvania Perelman School of Medicine , Philadelphia , PA., City of Hope/Beckman Research Institute , Duarte , CA., Kaiser Permanente Department of Research and Evaluation , Pasadena , CA., Kaiser Permanente Division of Research , Oakland , CA.