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Multi-institutional development of an online, interactive varicocele decision aid prototype
Alexandra R. Siegal, MD1, Fernando A. Ferrer, MD1, CD Anthony Herndon, MD2, M Chad Wallis, MD3, Neha R. Malhotra, MD1.
1Mount Sinai, New York, NY, USA, 2Children's Hospital of Richmond at Virginia Commonwealth, Richmond, VA, USA, 3University of Utah, Salt Lake City, UT, USA.

BACKGROUND: Decision-making about varicocele surgery is often an unclear, complex process characterized by multiple indications to seek treatment (testicular hypotrophy, pain, infertility, appearance) and multiple treatment options (observation, open, laparoscopic, embolization). Due to this, many patients and parents who choose to seek information and treatment for their or their child's varicocele may experience decisional conflict. Utilizing a decision-making aid can help navigate this issue, alleviating anxiety and confusion. The objective of this study was to develop a theoretical framework of the provider and patient/ parental decision-making process about varicoceles and varicocelectomy to inform the development of the first online, interactive, easily available decision aid.
METHODS: We conducted semi-structured interviews with pediatric urology providers and interventional radiologists to discuss their recommendations for a varicocele decision aid prototype. Interviews were audio recorded and transcribed. Transcripts were coded, key themes were identified, grouped, and then qualitatively analyzed. Utilizing the common themes identified and the Ottawa Decision Support Framework, we developed a decision aid prototype. The decision aid prototype was transformed into a user-friendly, interactive webpage which can be found at varicoceledecisionaid.com.
RESULTS: We interviewed pediatric urologic providers (n = 6) and interventional radiologists (n = 2) across 4 different institutions: average of 13 (SD 10) years practicing, 75% male, 100% caucasian. Key themes and subthemes were identified and are outlined below: 1) The definition and cause of varicoceles, 2) The purpose of varicocele repair (often a gray area, most varicoceles are not problematic, discomfort v. lack of testicular growth v. future fertility issues), 3) How varicoceles are treated (a variety of approaches - open microscopic, laparoscopic, embolization, all approaches are acceptable but have somewhat different complication profiles, an approach that your doctor is most comfortable with is most important), 4) Doctors taking ownership in guiding decision making for families, and 5) A need for appropriate patient counseling. With this insight we developed a varicocele decision aid prototype with accurate, evidence based, and educational content that engages patients and parents in the decision-making process. It consists of six modules: varicocele basics, treatment options, an interactive decision tool called "help me decide," frequently asked questions, words of wisdom from physicians, and a "contact me" page.
CONCLUSIONS: This is the first online, interactive, easily accessible varicocele decision aid prototype developed for patients by multi-disciplinary physicians across four institutions. Our decision aid helps clarify the decision-making process surrounding varicocele surgery. The decision aid can be used before or after consultation to understand more about varicoceles, and why we may or may not offer intervention. It also elucidates what each specific intervention entails. Future studies will implement and test the usability of this decision aid prototype in our practice and the wider urologic community.


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