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A multi-site pilot study of a parent-centered tool to promote shared decision-making in hypospadias care
Kelsey Binion, MA1, Akash Rode, BTech1, Gabrielle Nortey, MS2, Andrew Miller, PhD1, Rosalia Misseri, MD3, Martin Kaefer, MD3, Sherry Ross, MD2, Katherine H. Chan, MD, MPH2.
1Indiana University Purdue University-Indianapolis, Indianapolis, IN, USA, 2University of North Carolina School of Medicine, Chapel Hill, NC, USA, 3Indiana University School of Medicine, Indianapolis, IN, USA.

BACKGROUND: A pilot test of a decision aid website (DA) for parents of hypospadias patients was conducted to evaluate its acceptability, feasibility of study procedures, and preliminary efficacy outcomes using a pre/post design.
METHODS: English-speaking parents (≥18 years old) of boys with hypospadias (≤5 years) who were scheduled for an upcoming hypospadias consultation at one of two sites were recruited from June 2021 to February 2022. At multiple time points, parents were queried about treatment preference, and we administered a Hypospadias Knowledge Assessment and the Decisional Conflict Scale (See Figure). Website analytic data was obtained using an ad tracker plug-in to track participants' activities. We also administered the Decision Aid Acceptability Questionnaire and the Preparation for Decision-Making Scale (PrepDM), which assessed how well the DA prepared parents for decision-making with the urologist. In semi-structured interviews, parents were asked how the DA was used during the consultation and the factors that impacted their decision. Additionally, an assessment of parents' perception of involvement in decision-making with the Shared Decision-making Questionnaire (SDM-Q-9) was performed. A bivariate analysis compared participants' pre-intervention and pre/post-consultation hypospadias knowledge and decisional conflict. A thematic analysis identified factors influencing participants' consultation and treatment decisions. Lastly, we conducted semi-structured interviews with the pediatric urology providers who saw at least three enrolled parents to assess whether the DA was used during the visit and how it impacted conversations. A thematic analysis discovered providers' perceptions about the DA's influence on the visit.
RESULTS: Of 148 eligible parents, 65 (43.9%) enrolled: median age 29.2, 96.9% female, 76.6% White. Pre/post viewing the DA, there was a significant increase in hypospadias knowledge (54.3 vs. 75.6, p<0.001) and decrease in decisional conflict (36.0 vs. 23.1, p<0.001). Most parents (82%) thought DA's length and amount of information (73%) was "about right," and 91% found most or everything was clear. Pre/post-consultation, there was a significant decrease in decisional conflict (23.1 vs. 10.8, p<0.0001). The mean PrepDM score was 82.6/100 (SD=14.1), and the mean SDM-Q-9 score was 82.7/100 (SD=17.3). Participants spent an average 25.5 minutes reviewing the DA. The thematic analysis revealed that participants felt more informed and prepared for the conversation. As for the providers, they were unable to determine which parents had seen the DA, and they perceived no difference in conversations between the study participants and non-participants.
CONCLUSIONS: As the first pilot test of a pediatric urology DA, the intervention was feasible and acceptable to parents. Participants engaged extensively with the DA and demonstrated improved hypospadias knowledge and decision quality. They felt informed, well-prepared for the conversation with the urologist and indicated a high degree of perceived involvement in decision-making. We plan to conduct a randomized trial of the DA versus usual care to test efficacy.


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