What Does Cleft Lip and Palate Care Cost? The Time and Economic-Associated Burden of Care From Birth to Maturity

Introduction: This study aims to describe the burden of care (BoC) for the management of patients with nonsyndromic cleft lip and palate (CLP) by identifying provider burden, characterizing an interaction burden, and calculating an economic burden associated with their health system interactions. Methods: A retrospective chart review was conducted of patients with nonsyndromic CLP treated at a pediatric tertiary hospital between January 1, 1999, and April 30, 2021. Healthcare utilization data for inpatient and outpatient interactions were extracted. Community outpatient data were obtained from affiliated specialists. Bottom-up microcosting was utilized for hospital costing, the provincial tariff guide for provider reimbursement, and zip code for calculating patient costs. Results: In total, 58 patients identified with CLP had a median of 148.5 healthcare interactions (consults/follow-ups/surgeries) between the ages of 0 and 18 years. Patients had a median of 10.5 surgical procedures, and a median 135.8 outpatient interactions. The most used specialty service was orthodontics, with a median of 71.5 orthodontic interactions per patient. The median cost of care, including direct hospital costs, physician costs, community healthcare costs, and indirect costs, was $73,398. Conclusions: Patients born with nonsyndromic CLP have a very high frequency of healthcare encounters, out of proportion to cost associated with healthcare, suggesting an overall significant BoC.