Patient-reported outcomes in Irish adolescents who were born with cleft lip and palate.

Background & purpose: Cleft Lip and/or Palate, which affects approximately 1:650 live births in Ireland, is a complex congenital condition with lifelong implications. It can affect upper airway function, feeding, hearing, speech development, dental development as well as oral functioning, facial growth and physical appearance. Within cleft surgery, rigorous audit of speech, facial growth and nasolabial aesthetic outcomes is well-established. The importance of including patient-reported outcomes in our routine data-collection is now recognised. The purpose of the current study was to examine patient-reported outcomes (PROs) in a consecutive series of adolescents attending the Dublin Cleft Centre (DCC).

Methods: A validated patient-reported outcome measure (PROM), the CLEFT-Q, was prospectively administered to 156 patients attending the cleft clinic. Results were analysed according to cleft type and compared to those recorded in the CLEFT-Q validation study.

Results: Between (February 2020 and March 2022), the CLEFT-Q was administered to 156 patients with a mean age of 13.5 years (range 10-19 years). Males scored higher satisfaction across all subdomains irrespective of age. Satisfaction was higher in younger age groups compared to older patients in both appearance and quality of life outcomes. Patients with isolated cleft palate scored highest for satisfaction in school, social and psychological function.

Conclusions: PRO data now informs consultations with patients and families at the DCC. This information is also useful in targeting service development to the specific needs of this patient group.