Society For Pediatric Urology

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How a Shared Decision Making Process Changed Patient’s Choices for Bladder Surgery
Kathleen van Leeuwen, MD, Zachary Zuniga, MD, Gwen M. Grimsby, MD.
Phoenix Children's Hospital, Phoenix, AZ, USA.

How a Shared Decision Making Process Changed Patient’s Choices for Bladder Surgery
Objectives: In 2015 the AUA released a clinical guideline stating “shared decision making (SDM) is an important component of high-quality health care and in appropriate circumstances urologists should adopt SDM into routine clinical practice”. SDM is defined as the process by which a provider and patient reach an agreement, through collaborative deliberation, regarding the best treatment possible after discussing all options. This approach is crucial for patients with neurogenic bladder who often require complicated life altering surgical reconstruction of the urinary tract for renal preservation and social continence. The goal of this study was to retrospectively review decisions made by patients and their families after undergoing a SDM process to assist in guiding treatment discussions prior to reconstructive bladder surgery.
Methods: Starting in August 2016, as a quality initiative in urology, every patient’s family, as well as the patient if they were of age to participate, completed a SDM process with a decision aid specifically designed for complex bladder reconstruction (bladder augmentation, bladder neck reconstruction/closure/sling, catheterizable channel). The goal was to educate the patient and family about the patient’s diagnosis, introduce important aspects of life and health that may be affected by the diagnosis and potential surgery, provide a list of questions to ask, and to facilitate an informed discussion of the various management options. The decision aid consisted of written material to be taken home which described the treatment options and risks, benefits, and alternatives to the proposed procedure. A retrospective review was done evaluating all patients who went through the process. Outcomes assessed were the percentage of patients who chose to undergo surgery, which surgery the patients chose, and how many patients postponed surgery.
Results: 22 patients completed the SDM process, 10 were male (45%). Average patient age was 12 years old (4-22) at the time of the discussion. Underlying diagnoses included 14 spina bifida, 3 neurogenic bladder of unknown etiology, 2 caudal regression, 2 spinal cord injury, and 1 cerebral palsy. The SDM process took between 1 and 3 clinic visits to complete. After completing the process, 15 (68%) patients underwent bladder surgery and 32% postponed surgery because they did not feel ready or were unable to be compliant with catheterization. Of the 15 patients who underwent surgery, 6 (40%) choose an option other than bladder augmentation (5 Botox and 1 ileovesicostomy).
Discussion: The SDM process facilitates important discussions regarding surgical options and expectations prior to potentially complex and life-altering bladder surgery. Though the providers felt that all patients were candidates for surgery, after the SDM process only 68% of patients chose surgery and 40% of those chose an option other than augmentation. Use of such tools may alleviate stress for families, enhance trust in providers, set expectations for the surgery and aftercare, and allow for a more informed decision making process for the patients and their families.

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