Ask the parents: Testing the acceptability and usability of a hypospadias decision aid
Kelsey E. Binion, MA1, Andrew Miller, PhD1, Rosalia Misseri, MD2, Martin Kaefer, MD2, Krista Hoffmann-Longtin, PhD1, Aaron Carroll, MD, MS2, Sarah E. Wiehe, MD, MPH2, Katherine H. Chan, MD, MPH3.
1Indiana University Purdue University-Indianapolis, Indianapolis, IN, USA, 2Indiana University School of Medicine, Indianapolis, IN, USA, 3University of North Carolina, Chapel Hill, NC, USA.
BACKGROUND: To address decisional conflict and regret amongst parents of hypospadias patients, our team developed a decision aid (DA) to facilitate shared decision-making about hypospadias. The DA’s design was informed by feedback from three co-design workshops, which included parents of hypospadias patients and urologists. This study’s purpose was to assess the web-based DA prototype’s acceptability and usability. We sought to identify issues with the DA, assess their severity, and propose changes prior to pilot-testing in the clinical setting. METHOD: We recruited English-speaking parents (≥ 18 years old) of sons with hypospadias (≤5 years) to participate in a two-phase process. Each phase included semi-structured phone/video interviews to obtain feedback about the DA prototype. DA webpages included: “Hypospadias,” “Surgery Basics,” “No Surgery,” “Family Stories,” “Help Me Decide,” and “FAQs.” In both phases, parents viewed the DA using a “think aloud” technique and completed several validated scales to evaluate its acceptability and usability. Phase 1 collected feedback about the “Homepage” organization and language, values clarification methods (VCMs), and webpage content. In phase 2, parents searched for answers to hypospadias-related questions, provided feedback on testimonial videos and VCMs, and shared their preferences about data visualizations. All interviews were audio recorded and professionally transcribed. After each phase, transcripts were qualitatively analyzed to identify key areas for revision. Revisions were made between phase 1 and 2 to improve the DA’s acceptability and usability. RESULTS: We interviewed 20 parents (10/phase): median age 33.7 years, 60% female, 80% White. Both phases’ acceptability and usability scores were high. The Preparation for Decision-making Scale mean score was 86.8 (out of 100 points; standard deviation 6.7), which indicates a high perceived level of preparation for decision making. Based on feedback, we revised: (1) VCMs to focus on pros/cons of surgery and question prompts to ask a provider or partner (Figure 1); (2) “Homepage,” adding webpage descriptions; (3) menu organization; (4) “Surgery Day” page, adding information about general anesthesia risks; and (5) “Hypospadias” page, adding an icon bar graph to visualize statistics (Figure 2). Parents thought the testimonial videos were relatable and the VCMs would prepare them for their visit with their child’s urologist. CONCLUSION: To our knowledge, this is the first parent-centered DA prototype to be developed and tested for hypospadias. Participatory research methods, such as “think aloud,” may be helpful when developing DAs as they privilege the patient’s experience. Overall, parents found the DA informative in understanding hypospadias. There was a high perceived level of preparation for hypospadias decision-making after viewing the DA prototype.
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