TY - JOUR
T1 - Shared Decision-Making
T2 - Process for Design and Implementation of a Decision Aid for Patients With Craniosynostosis
AU - Said, Abdullah M.
AU - Zubovic, Ema
AU - Pfeifauf, Kristin D.
AU - Skolnick, Gary B.
AU - Agboada, Jude
AU - Acayo-Laker, Penina
AU - Naidoo, Sybill D.
AU - Politi, Mary C.
AU - Smyth, Matthew
AU - Patel, Kamlesh
N1 - Publisher Copyright:
© 2022, American Cleft Palate Craniofacial Association.
PY - 2024/1
Y1 - 2024/1
N2 - 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.
AB - 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.
KW - dysmorphology
KW - pediatrics
KW - synostosis
UR - http://www.scopus.com/inward/record.url?scp=85138601852&partnerID=8YFLogxK
U2 - 10.1177/10556656221128413
DO - 10.1177/10556656221128413
M3 - Article
C2 - 36128842
AN - SCOPUS:85138601852
SN - 1055-6656
VL - 61
SP - 138
EP - 143
JO - Cleft Palate-Craniofacial Journal
JF - Cleft Palate-Craniofacial Journal
IS - 1
ER -