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.
The objectives were to assess the Hub’s acceptability, remote usability, and feasibility of study procedures, and to evaluate its preliminary efficacy.
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.
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.
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.
To read this article in full you will need to make a payment
Purchase one-time access:Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
One-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:Subscribe to Journal of Pediatric Urology
Already a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
- Parental decision regret in childhood hypospadias surgery: A systematic review.J Paediatr Child Health. 2020; 56: 1514-1520https://doi.org/10.1111/jpc.1=5075
- Parental decision regret among Australian parents after consenting to or refusing hypospadias repair for their son: results of a survey with controls.J Pediatr Urol. 2022; 18: 482-488https://doi.org/10.1016/j.jpurol.2022.04.023
- AUA white paper on implementation of shared decision making into urological practice.Urol Pract. 2016; 3: 355-363https://doi.org/10.1016/j.urpr.2015.10.006
- Decision aids for people facing health treatment or screening decisions.Cochrane Database Syst Rev. 2017; 4CD001431https://doi.org/10.1002/14651858.CD001431.pub5
- Knowledge gaps and information seeking by parents about hypospadias.J Pediatr Urol. 2020; 16: 166.e1-166.e8https://doi.org/10.1016/j.jpurol.2020.01.008
- User-centered development of a hypospadias decision aid prototype.J Pediatr Urol. 2020; 16: 684.e1-684.e9https://doi.org/10.1016/j.jpurol.2020.07.047
- Parental perspectives on decision-making about hypospadias surgery.J Pediatr Urol. 2019; 15: 449.e1-449.e8https://doi.org/10.1016/j.jpurol.2019.04.017
- Ask the parents: testing the acceptability and usability of a hypospadias decision aid.J Pediatr Urol. 2022; 18: 170.e1-170.e9https://doi.org/10.1016/j.jpurol.2022.01.004
- User testing of a hypospadias decision aid prototype at a pediatric medical conference.J Pediatr Urol. 2020; 16: 685.e1-685.e8https://doi.org/10.1016/j.jpurol.2020.08.006
- Guidelines for designing and evaluating feasibility pilot studies..Med Care. 2022; 60: 95-103https://doi.org/10.1097/MLR.0000000000001664
- Purposeful sampling for qualitative data collection and analysis in mixed method implementation research.Adm Policy Ment Health. 2015; 42: 533-544https://doi.org/10.1007/s10488-013-0528-y
- The Single Item Literacy Screener: evaluation of a brief instrument to identify limited reading ability.BMC Fam Pract. 2006; 7: 21https://doi.org/10.1186/1471-2296-7-21
- Validation of a decisional conflict scale.Med Decis Making. 1995; 15: 25-30https://doi.org/10.1177/0272989X9501500105
- Matomo [computer software]. Version 4.8. Wellington, New Zealand. Matthieu Aubry, 2021
- Validation of a preparation for decision making scale.Patient Educ Counsel. 2010; 78: 130-133https://doi.org/10.1016/j.pec.2009.05.012
- User manual – acceptability [document on the Internet].Ottawa Hospital Research Institute, Ottawa1996
- The 9-item Shared Decision Making Questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample.Patient Educ Counsel. 2010; 80 (0.1016/j.pec.2009.09.034): 94-99
- Validation of a decision regret scale.Med Decis Making. 2003; 23: 281-292https://doi.org/10.1177/0272989X03256005
- Mantel-Haenszel methods.in: Armitage P. Colton T. Encyclopedia of biostatistics. Wiley, Hoboken1998: 2378-2391
- NVivo [Computer software]. Version 1.0. Doncaster, Australia. QSR International, 2020
- Pilot studies: a critical but potentially misused component of interventional research.JAMA. 2015; 314: 1561-1562https://doi.org/10.1001/jama.2015.10962
- Recommendations for planning pilot studies in clinical and translational research.Clin Transl Sci. 2011; 4: 332-337https://doi.org/10.1111/j.1752-8062.2011.00347.x
- Shared decision making in pediatrics: A systematic review and meta-analysis.Acad Pediatr. 2015; 15: 575-583https://doi.org/10.1016/j.acap.2015.03.011
- Do personal stories make patient decision aids more effective? An update from the international patient decision aids standards.Med Decis Making. 2021; 41: 897-906https://doi.org/10.1186/1472-6947-13-S2-S9
- Decision aid for nutrition support in pediatric oncology: A pilot study.Parenter Enter Nutr. 2017; 41: 1336-1347https://doi.org/10.1177/0148607116661840
- Decision aid prototype for treatment of pediatric sleep disordered breathing: a randomized pilot study.Laryngoscope. 2019; 129: 229-234https://doi.org/10.1002/lary.27204
- Determining sample size for progression criteria for pragmatic pilot RCTs: the hypothesis test strikes back.Pilot Feasibility Stud. 2021; 7: 40https://doi.org/10.1186/s40814-021-00770-x
Published online: February 06, 2023
Accepted: January 30, 2023
Received in revised form: December 14, 2022
Received: July 28, 2022
Publication stageIn Press Journal Pre-Proof
☆The study is registered on ClinicalTrials.gov, identifier: NCT05056311.
© 2023 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
ScienceDirectAccess this article on ScienceDirect
- 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 . The authors continue their efforts to provide a tool (hypospadias hub) to empower parents to make an informed decision about hypospadias surgery . 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.