Patient Reported Outcomes in Patients with Cleft Lip and/or Palate Help Identify Youth at Risk for Suicidality

Objective To identify associations between scores on the CLEFT-Q and Columbia-Suicide Severity Rating Scale (C-SSRS) Lifetime Version in patients with cleft lip and/or palate (CLP). Design Prospective. Setting Tertiary care center. Patients, Participants Patients ages six and older administered both the CLEFT-Q questionnaire and C-SSRS survey between 2019 and 2024. Interventions Multidisciplinary care coordination facilitated by the team psychologist. Main Outcome Measure(s) Associations among demographics, CLEFT-Q responses, and suicidality. Results A total of 305 patients were included, 141 females (46.2%) and 164 males (53.8%). Fifty-one (16.7%) endorsed lifetime incidence of suicidal ideation, four (1.3%) endorsed suicidal behavior, 12 (3.9%) endorsed non-suicidal self-injury (NSSI), and one (0.3%) endorsed self-injurious behavior, intent unknown. Patients endorsing suicidal ideation had lower PROs in 12/13 categories on the CLEFT-Q questionnaire (p < 0.001). Those with suicidal behavior had lower PROs in three health-related quality of life categories (psychological function, p = 0.018; social function, p = 0.005; school function, p = 0.007), but no difference in other domains. A cutoff of ≤70 in the CLEFT-Q psychological function domain identified suicidal ideation with 72.9% sensitivity and 65.9% specificity and suicidal behavior with 100.0% sensitivity and 62.2% specificity. Conclusions Patients with cleft lip and/or palate have increased risks for psychosocial challenges that are often missed by healthcare providers. This study reveals that patient-reported outcomes are worse in those with CLP who endorsed suicidal ideation and behavior. Low PRO responses identify suicidality with moderate sensitivity and specificity. Patients with low scores should be offered safety screenings and psychosocial support, ideally by mental healthcare professionals.