Mental health care provision is increasingly recognized as necessary in the treatment of craniofacial conditions and an essential part of multidisciplinary teams. European Reference Networks (ERNs) are networks involving hospitals recognized as expert centers for specific rare conditions. The current study investigated the extent and organization of mental health care services within the ERN for rare and/or complex craniofacial anomalies and ear, nose, and throat disorders (ERN CRANIO). An online survey was sent to all full and affiliated member centers involved in the treatment of craniofacial conditions (41 centers, 19 countries). Respondents were Mental Health Care Providers (MHPs) and/or Team Coordinators (TCs). The response rate was 90.2%. Most centers (86.5%) had a MHP connected to the team, 46.9% of those in a full-time position. The accessibility of the MHP did not seem to be related to a center's number of new patients per year. Patient groups were children/adolescents (83.8%), caregivers (73.0%), or adults (21.6%). A quarter (25.0%) offered follow-ups across the lifespan. MHPs provided consultations and/or interventions (31.9%), cognitive and/or developmental assessments (18.7%), support during hospitalizations (16.9%), and attended multidisciplinary meetings about/with patients (13.6%). Financial barriers were mentioned by all centers without access to an MHP. Results indicate that most ERN CRANIO centers have an MHP connected to their team. Mental health services, however, vary both in terms of the MHP's availability, and the type of service offered. Future studies should evaluate how psychological services should be offered and include the perspectives of families/patients with craniofacial conditions.
Keywords: Craniofacial; ERN CRANIO; mental health services; multidisciplinary; oral cleft.
Copyright © 2025 by Mutaz B. Habal, MD.