Summary
Background
Using a user-centered design approach, we conducted a two-site pilot study to evaluate
a decision aid (DA) website, the Hypospadias Hub, for parents of hypospadias patients.
Objectives
The objectives were to assess the Hub’s acceptability, remote usability, and feasibility of study procedures, and to evaluate
its preliminary efficacy.
Methods
From June 2021–February 2022, we recruited English-speaking parents (≥18 years old)
of hypospadias patients (≤5 years) and delivered the Hub electronically ≤2 months before their hypospadias consultation. We collected website
analytic data using an ad tracker plug-in. We inquired about treatment preference,
hypospadias knowledge, and decisional conflict (Decisional Conflict Scale) at baseline,
after viewing the Hub (pre-consultation), and post-consultation. We administered the Decision Aid Acceptability
Questionnaire (DAAQ) and the Preparation for Decision-Making Scale (PrepDM) which
assessed how well the Hub prepared parents for decision-making with the urologist. Post-consultation, we assessed
participants’ perception of involvement in decision-making with the Shared Decision-making
Questionnaire (SDM-Q-9) and the Decision Regret Scale (DRS). A bivariate analysis
compared participants’ baseline and pre/post-consultation hypospadias knowledge, decisional
conflict, and treatment preference. Using a thematic analysis, we analyzed our semi-structured
interviews to uncover how the Hub impacted the consultation and what influenced participants’ decisions.
Results
Of 148 parents contacted, 134 were eligible and 65/134 (48.5%) enrolled: mean age
29.2, 96.9% female, 76.6% White (Extended Summary Figure). Pre/post-viewing the Hub, there was a statistically significant increase in hypospadias knowledge (54.3 vs.
75.6, p < 0.001) and decrease in decisional conflict (36.0 vs. 21.9, p < 0.001). Most
participants (83.3%) thought Hub’s length and amount of information (70.4%) was “about right”, and 93.0% found most
or everything was clear. Pre/post-consultation, there was a statistically significant
decrease in decisional conflict (21.9 vs. 8.8, p < 0.001). PrepDM’s mean score was
82.6/100 (SD = 14.1); SDM-Q-9’s mean score was 82.5/100 (SD = 16.7). DCS’s mean score
was 25.0/100 (SD = 47.03). Each participant spent an average of 25.75 min reviewing
the Hub. Based on thematic analysis, the Hub helped participants feel prepared for the consultation.
Discussion
Participants engaged extensively with the Hub and demonstrated improved hypospadias knowledge and decision quality. They felt prepared
for the consultation and perceived a high degree of involvement in decision-making.
Conclusion
Graphical AbstractCONSORT diagram depicting study enrollment and data collection.
Keywords
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Article info
Publication history
Published online: February 06, 2023
Accepted:
January 30,
2023
Received in revised form:
December 14,
2022
Received:
July 28,
2022
Publication stage
In Press Journal Pre-ProofFootnotes
☆The study is registered on ClinicalTrials.gov, identifier: NCT05056311.
Identification
Copyright
© 2023 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
ScienceDirect
Access this article on ScienceDirectLinked Article
- Decision making in hypospadias and complications: the elephant in the hypospadias roomJournal of Pediatric Urology
- PreviewI read with great interest the study by Binion et al [1]. The authors continue their efforts to provide a tool (hypospadias hub) to empower parents to make an informed decision about hypospadias surgery [2]. Decisional regret (DR) in parents of children who underwent hypospadias surgery has been the interest of many studies in recent years. It has been linked to decisional conflict and the authors could demonstrate they reduced it in the studied cohort of 27 parents by providing extensive pre consultation information.
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