Surgeon Perspectives on Cleft Lip and Palate Repair in Patients With Life-Limiting and Terminal Illnesses: An ACPA Member Survey

ObjectiveTo investigate operative experiences and perspectives of surgeons presented with cleft lip (CL) and/or palate (CP) in children with life-limiting and terminal illnesses.DesignSurvey study.SettingElectronic.Patients, ParticipantsAmerican Cleft Palate Craniofacial Association surgeon members.InterventionsNone.Main Outcome MeasuresProportion of surgeons who performed cleft lip and/or palate (CL/P) repair, likelihood to operate again, and factors impacting operative decision.ResultsResponse rate was 20.5% (121/589) including 113 surgeons treating CL/P across plastic surgery (63.7%), otolaryngology (23.9%), and oral and maxillofacial surgery (12.4%). More completed CL than CP repairs (59.3% vs 21.2%) for patients with example conditions of holoprosencephaly, cardiac abnormalities, trisomy 13, and trisomy 18. Leading CL repair motivations were "parent/caregiver request" (89.6%, 60/67), "appearance" (62.7%, 42/67), and "feeding" (28.4%, 19/67). Leading CP repair motivations were "parent/caregiver request" (66.7%, 16/24), "feeding" (62.5%, 15/24), and "communication" (54.2%, 13/24). Surgeons who had not attempted CL repair described lacking opportunity (34.8%, 16/46) or unfavorable risk-benefit ratios (37.0%, 17/46) as reasons. A greater proportion of those who had not attempted CP repair cited unfavorable risk-benefit ratios (59.6%, 53/89) versus lacking opportunity (21/89, 23.6%). 100% and 95.8% who repaired CL and CP endorsed they would again.ConclusionsSurgeons more commonly repaired CL than CP in children with life-limiting and terminal illnesses. Nearly all would perform these surgeries again. Respondents who did not repair CP often stated risks outweighed benefits. Studies exploring outcomes of CL/P repair in patients with life limiting and terminal illnesses are scarce. More data are needed to help guide these difficult decisions.