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Using Patient-Reported Outcome Measures to Screen for Cognitive Function Deficits and Stigma in Patients with
Abdullah M Said1, Gary B Skolnick1, Sarah Girresch-Ward1
1From the Division of Plastic and Reconstructive Surgery, Department of Surgery, and Department of Neurosurgery, Washington University School of Medicine in St. Louis; and Department of Psychology, St. Louis Children's Hospital.
Insights
Patient-reported outcomes measures offer a quick and effective way to assess stigma and cognitive function in children with single-suture craniosynostosis, streamlining clinical evaluations.
Area of Science:
- Pediatric Health
- Neurodevelopmental Disorders
- Psychosocial Assessment
Background:
- Children with single-suture craniosynostosis often experience subtle deficits in appearance and neurodevelopment.
- Traditional assessments for these deficits are time-consuming and may not be feasible in routine clinical settings.
- Efficient screening tools are needed to evaluate psychosocial parameters in this population.
Purpose of the Study:
- To evaluate the utility of patient-reported outcomes measures (PROMs) for assessing psychosocial parameters in children with repaired single-suture craniosynostosis.
- To determine the time efficiency and clinical utility of the Patient-Reported Outcomes Measurement Information System (PROMIS) and Quality of Life in Neurological Disorders (QOLIN-D) questionnaires.
- To correlate PROM scores with established measures like the Child Behavior Checklist (CBCL).
Main Methods:
- Fifty-nine patients aged 5 years or older with repaired single-suture craniosynostosis completed PROMIS and QOLIN-D questionnaires electronically.
- Parents completed proxy cognitive function surveys for children under 8 years old.
- Questionnaire data were correlated with existing CBCL subscores.
Main Results:
- The median completion time for the questionnaires was remarkably short (57 and 49 seconds).
- Both stigma and cognitive function scores showed significant correlations with corresponding CBCL subscores (Spearman's rho = -0.384, p = 0.023 for stigma; Spearman's rho = -0.683, p = 0.001 for cognitive function).
- Electronic administration and scoring facilitated seamless integration into the electronic medical record.
Conclusions:
- PROMIS and QOLIN-D provide a convenient and efficient method for screening psychosocial parameters in children with single-suture craniosynostosis.
- These PROMs overcome the limitations of lengthy traditional examinations.
- The short completion times and electronic scoring enhance the clinical utility of these valuable assessment tools.
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.

