Evaluation of parental and surgeon stressors and perceptions of distraction osteogenesis in pediatric craniofacial patients: a cross-sectional survey study

Rosaline S. Zhang, Lawrence O. Lin, Ian C. Hoppe, Ari M. Wes, Jordan W. Swanson, Scott P. Bartlett, Jesse A. Taylor

There is a paucity of literature on how limitations of distraction osteogenesis (DO) are perceived by physicians and parents of pediatric patients. Specifically understanding which features of DO are most concerning to these two groups may better inform parent education, as well as direct improvements in distraction protocols and devices. Parents/guardians of patients (between January 2016 and October 2017) being treated with craniofacial distraction were recruited to complete a survey regarding level of stress (1 = not stressful, 9 = maximally stressful) associated with eight features of DO. Craniofacial surgeons completed a survey asking them to report (1) their personal level of stress and (2) their perceptions of parental stress regarding these same eight features of DO. Thirty-five parents and 15 craniofacial surgeons completed the survey. The risk of the device getting infected was perceived as most stressful by parents (5.5 ± 2.3) followed by the device sticking through the skin (4.9 ± 2.6) and the second operation for removal (4.7 ± 2.3). These same three features also elicited the highest level of stress among surgeons. Surgeon-perceived parental stress regarding turning of the distractor (5.8 ± 1.5) was significantly higher than parent self-reported stress (4.2 ± 2.8, p = 0.042). Both parents and surgeons perceive risk of device-associated infection, the protrusion of the device through the skin, and the requirement of a second operation for removal as the most stressful drawbacks of distraction. Infection reduction protocols, less obtrusive devices, and devices that do not require removal are potential targets for stress reduction.