Abstract

The burden of cleft care throughout a patients’ life includes plastic surgery, otolaryngology (ENT), speech therapy and dental and orthodontic care, all of which are required to achieve an optimal outcome. We aimed to determine the burden of care across multiple specialties in babies born with cleft lip and/or palate up to the age of 21 years. We compare the outcomes to two larger multi-centre studies: the Americleft and Eurocleft studies. The regional database was used and all babies born between 1988 and 1995 were included. Medical records and the cleft database were used to determine cleft subtype, operations and outpatient appointments (plastics, ENT, dental, orthodontic, speech and language), hospital stay and length of follow-up. A total of 321 patients with cleft lip and/or palate were born between 1988 and 1995. Complete data was available for 106 (33%). Primary and secondary plastic surgery operations increased with increasing cleft severity. Secondary surgery was highest in unilateral cleft lip and palate (UCLP)—64%. Total inpatient stay for plastic surgery operations was highest for bilateral cleft lip and palate (BCLP) (16.4 days) compared with 7.7 for incomplete cleft palate (iCPO). The outpatient burden for all specialities was highest in complex cleft patients: 48.5 appointments compared with 25.5 for children with an incomplete cleft palate. Follow-up time increased from 14.2 to 20.5 years. Unsurprisingly, both the inpatient and outpatient burdens of care are influenced by the complexity of the cleft and increase with worsening severity. Our results will help inform parents of the likely trajectory their child will face when diagnosed with each subtype of cleft. The 2014 data shows that modern cleft care is changing; a combination of reduced hospital stay and the addition of streamlined outpatient appointments will both be of great benefit. The influence of modern day life will hopefully reduce the associated burden that has been highlighted in this paper and it is vital the benefits of modernisation are communicated to parents as well. Level of evidence: Level III, risk/prognostic study.

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