Using Patient-Reported Outcome Measures to Screen for Cognitive Function Deficits and Stigma in Patients with Single-Suture Craniosynostosis

Summary: Children with single-suture craniosynostosis have small but significant deficits in appearance ratings and neurodevelopment. Traditionally, these parameters are studied using a full battery of examinations, which are very time consuming. This study evaluated a convenient method to measure psychosocial parameters in this population by utilizing patient-reported outcomes measures to evaluate cognitive function and stigma. Stigma and cognitive function were measured, using the Patient-Reported Outcomes Measurement Information System and Quality of Life in Neurological Disorders questionnaires, in 59 consecutive patients at least 5 years old presenting to clinic from July of 2018 to January of 2020 with repaired single-suture craniosynostosis. Parents completed parent proxy cognitive function surveys for patients under age 8. Questionnaires were administered electronically as part of clinical care. Scores were automatically transferred to the electronic medical record and correlated with previously acquired Child Behavior Checklist results. Median time to complete the questionnaires was 57 and 49 seconds, respectively. Stigma and cognitive function were significantly correlated with the associated Child Behavior Checklist subscores (Spearman's rho, -0.384, p = 0.023; and Spearman's rho, -0.683, p = 0.001, respectively). The Patient-Reported Outcomes Measurement Information System and Quality of Life in Neurological Disorders questionnaires offer a convenient method of screening psychosocial parameters in children with single-suture craniosynostosis that otherwise would be difficult to obtain during standard visits. Short completion times and electronic scoring increase clinical utility. CLINICAL QUESTION/LEVEL OF EVIDENCE: Diagnostic, II.