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

TY - JOUR

T1 - Patient-Reported Outcomes Using the CLEFT-Q

T2 - Results from a Pilot Study of an Adult Cleft Lip and Palate Clinic

AU - O'Driscoll, Jill Anne

AU - Mcintyre, Grant

AU - Mossey, Peter

N1 - Publisher Copyright: © 2026, American Cleft Palate Craniofacial Association

PY - 2026/6/1

Y1 - 2026/6/1

N2 - Objective: To explore patient-reported outcomes using CLEFT-Q at a pilot adult cleft lip and palate (CLP) audit clinic. Design: Cross-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. Participants: Adults 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 Measure: Participants 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. Results: The 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. Conclusion: In 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.

AB - Objective: To explore patient-reported outcomes using CLEFT-Q at a pilot adult cleft lip and palate (CLP) audit clinic. Design: Cross-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. Participants: Adults 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 Measure: Participants 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. Results: The 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. Conclusion: In 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.

KW - cleft lip

KW - cleft lip and palate

KW - cleft palate

KW - psychological assessment

UR - https://www.scopus.com/pages/publications/105040632149

U2 - 10.1177/10556656261455716

DO - 10.1177/10556656261455716

M3 - Article

C2 - 42220266

AN - SCOPUS:105040632149

SN - 1055-6656

JO - Cleft Palate Craniofacial Journal

JF - Cleft Palate Craniofacial Journal

ER -