Cleft-Related Revision Procedures: Surgeon Perspectives on Shared Decision-Making and a Decision Aid Prototype.

Abstract

Objective: Decision-making for elective cleft lip and nose revisions varies widely, from patient-led decisions to more paternalistic approaches. As these procedures incur additional scarring that may impact future interventions, patients should be equipped to participate in these surgical decisions. We thus developed a decision aid based on international standards, and to ensure methodologic rigor, we sought feedback from other surgeons regarding shared decision-making and potential barriers to adopting the decision aid.

Design: The decision aid was developed based on qualitative patient data, expert opinion, and International Patient Decision Aid Standards (IPDAS). It was first piloted using a "think aloud" approach and subsequently revised. In the present study, this version was presented to a diverse focus group of surgeons. The conversation was audio-recorded and transcribed. The transcription was coded independently by 2 authors, and codes were categorized for theme development.

Setting: American Cleft Palate-Craniofacial Association meeting, April 2024.

Participants: Focus group of 8 board-certified craniofacial surgeons.

Main outcome measures: Surgeon feedback regarding appeal, usefulness, and generalizability of the decision aid.

Result(s): Eight surgeons participated. Mean age was 43 years (SD 5.7), and mean number of years in practice was 9.3 (SD 6.0). Four were female, and 4 were male. Three themes emerged: (1) Appeal to the consumer, (2) Acknowledge the parents, and (3) Consider logistics of decision aid delivery.

Conclusions: Based on surgeon feedback, the decision aid will be web-based, explicitly recognize the importance of parents, and maximize the likelihood that patients viewing the decision aid are surgical candidates.