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.