Abstract
INTRODUCTION: Children with Pierre Robin sequence (PRS) have a complex clinical presentation and requires many health-care providers. Thus, multiple clinical pathways have been proposed on how to manage this population, with some opting for conservative measures while others opting for a surgical approach. However, no consensus has been reached on the most appropriate protocol. OBJECTIVE: To present the treatment protocol for PRS at the Hospital for Sick Children. This will be evaluated through a qualitative examination of the approach from the patient's perspective, and a micro-costing analysis of the financial aspects of providing care. METHODS: A retrospective cohort study was conducted to evaluate infants who were admitted with PRS and failure to thrive from January 2004 to December 2015. This was followed by a micro-costing analysis to evaluate the cost of the management protocol. Finally, a qualitative evaluation of the parent's perspective was done. RESULTS: Eighty-nine patients were admitted with failure to thrive during the study period. Fourteen patients underwent surgical management. Fourteen patients required readmission for airway or feeding issues secondary to PRS. The average cost per patient was Can$105 996. With regard to the qualitative evaluation, key themes that were generated included stress upon hospital admission, variable methods of understanding PRS, good level of communication with the team, excellent hospital process, and challenging transition home. CONCLUSION: These results will aid in the continual evolution of a protocol and provide important information on PRS to both families and centers that manage these children.