Shared Decision-Making: Process for Design and Implementation of a Decision Aid for Patients With Craniosynostosis

Abdullah M. Said, Ema Zubovic, Kristin D. Pfeifauf, Gary B. Skolnick, Jude Agboada, Penina Acayo-Laker, Sybill D. Naidoo, Mary C. Politi, Matthew Smyth, Kamlesh Patel

Research output: Contribution to journalArticlepeer-review

2 Scopus citations


Objective : To describe the process of developing a craniosynostosis decision aid. Design : We conducted a mixed-methods exploratory study between August 2019 and March 2020 to develop a decision aid about surgical treatment for single suture craniosynostosis. Setting : A single tertiary care academic children’s hospital. Participants : The decision aid development team consisted of surgeons, research fellows, a clinical nurse practitioner, clinical researchers with expertise in decision science, and a university-affiliated design school. Qualitative interviews (N = 5) were performed with families, clinicians (N = 2), and a helmeting orthotist to provide feedback on decision aid content, format, and usability. Interventions : After cycles of revisions and iterations, 3 related decision aids were designed and approved by the marketing arm of our institution. Distinct booklets were created to enable focused discussion of treatment options for the 3 major types of single suture craniosynostosis (sagittal, metopic, unicoronal). Results : Three decision aids representing the 3 most common forms of single suture craniosynostosis were developed. Clinicians found the decision aids could help facilitate discussions about families’ treatment preferences, goals, and concerns. Conclusions : We developed a customizable decision aid for single suture craniosynostosis treatment options. This tool lays the foundation for shared decision-making by assessing family preferences and providing clear, concise, and credible information regarding surgical treatment. Future research can evaluate this tool’s impact on patient–clinician discussions about families’ goals and preferences for treatment.

Original languageEnglish
Pages (from-to)138-143
Number of pages6
JournalCleft Palate-Craniofacial Journal
Issue number1
StatePublished - Jan 2024


  • dysmorphology
  • pediatrics
  • synostosis


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