Patient-Reported Outcomes Using the CLEFT-Q: Results from a Pilot Study of an Adult Cleft Lip and Palate Clinic

ObjectiveTo explore patient-reported outcomes using CLEFT-Q at a pilot adult cleft lip and palate (CLP) audit clinic.DesignCross-sectional study completed at two Dental Hospitals (Glasgow Dental Hospital and School and Dundee Dental Hospital and Research School) and coinciding with a National Cleft Surgical Service's pilot CLP audit clinic.ParticipantsAdults who had primary surgery for orofacial cleft (OFC) performed in National Health Service Greater Glasgow and Clyde Health Board between 1990 and 2005.Main Outcome MeasureParticipants completed the validated CLEFT-Q scored 0-100, with higher scores reflecting better outcomes. Cleft lip (CL) and CLP scores were compared with Mann-Whitney U tests.ResultsThe response rate was 33% with 21 participants (14 female, 7 male) and a mean age of 21.9 ± 3.2 years (range 17-31 years). The sample included adults born with unilateral cleft lip (CL; n = 6), cleft palate (CP; n = 2), unilateral cleft lip and palate (UCLP; n = 8), and bilateral cleft lip and palate (BCLP; n = 5). Across cleft types, CLEFT-Q scores ranged from 36.0 ± 23.3 (Lips) to 93.0 ± 22.6 (Speech Distress) for adults with CL; from 28.5 ± 22.4 (Nostrils) to 75.4 ± 21.0 (Speech Distress) for adults with UCLP; and from 31.8 ± 26.5 (Nostrils) to 76.4 ± 18.7 (School) for adults with BCLP. There were no significant differences between adults with CL and those with CLP across the 12 CLEFT-Q scales.ConclusionIn this limited sample, scales of CLEFT-Q demonstrated a range of outcomes. The results provide baseline data for future research. Further work is needed to address residual concerns for adults with OFC.