Patient Reported Outcomes after Le Fort 1 Rigid External Distraction

Objective: Cleft nasomaxillary deficiency is present in approximately 50% of individuals with ULCP and 77% of those with BLCP. Some surgeons advocate for Le Fort 1 midface distraction osteogenesis (DO) in early adolescence in hopes to address severe anteroposterior deficiency, leading to psychosocial improvement. The purpose of this study is to explore patient reported outcomes (PROMs) and satisfaction with RED (Rigid External Distractor) with or without definitive orthognathic surgery. Setting: Patients with CLP treated with RED at our institution by the Oral and Maxillofacial Surgery (OMS) department. Design: A retrospective cross-sectional survey was distributed. The survey explored health, function and esthetics, device-specific morbidity, and global satisfaction. Participants: The survey was distributed to 52 patients. Response rate was 34.6% and the average age was 23.2 ± 5.44. 55.6% (10/18) were advised to undergo orthognathic surgery and 8 of those proceeded. Results: Most patients were strongly (55.6%) or somewhat satisfied (22.2%) with their outcomes following RED. However, patients reported difficulty with daily activities and reported their overall experience as poor (33.3%) or fair (22.2%). Those patients who also underwent orthognathic surgery reported higher pain levels during DO treatment (7.78 ± 1.64 vs 5.44 ± 3.78; P = .04) and were less likely to recommend treatment to others (3.89 ± 0.93 vs 3.00 ± 0.82; P = .04). Conclusions: Patients were satisfied with their post-treatment appearance and jaw function but reported pain and significant constraints during treatment. Consideration for preadolescent DO to improve psychosocial functioning should be balanced with the challenges of the DO experience and exposure to additional surgeries.