Resident SLU Saint Louis University School of Medicine Saint Louis, Missouri, United States
Background: Global developmental delay is characteristic of young children with trisomy 21. Therapy utilization for children 0-4 yrs with trisomy 21 is high: 50% with trisomy 21 receive physical therapy, whereas 3% in a general population do. In neurotypical populations, maternal recall of having a concern of developmental delay is fairly reliable, though accuracy decreases with therapy involvement. A separate study has shown that parents of children with trisomy 21 may perceive language delay as less severe than parents of children with nonsyndromic language delay. There is limited data on the accuracy of parent report of other domains in early development in children with trisomy 21, especially in the context of therapy utilization.
Objective: This study aims to describe therapy utilization in young children (0-3 yrs) with trisomy 21 and determine if parent report of fine motor skills is predictive of directly assessed visual motor skills. The hypothesis is that parents will overestimate their child's fine motor ability.
Design/Methods: A retrospective chart review was completed for 34 children 0-3 yrs attending a first visit in a multidisciplinary trisomy 21 clinic. Demographics and medical history were obtained. Clinic visit included an interview of development with the primary caregiver via the Ireton Child Development Inventory and standardized testing via the Clinical Adaptive Test/Clinical Linguistic and Auditory Milestone Scale (CAT/CLAMS). The Pearson's correlation coefficient test was used to compare Ireton fine motor DQ and CAT visual-motor DQ.
Results: 97.1% of children were enrolled in therapy and 70.6% received multiple therapies. 97.1% had one or more medical diagnoses, with 70.6% having congenital heart disease. 76.5% of caregivers reported at least mild fine motor delay (DQ ≤70) on Ireton. Median Ireton fine motor DQ was 66.5 (IQR 54.5-80.8) and median CAT visual-motor DQ was 66.0 (IQR 55.8-72.5). There was a moderately strong correlation between Ireton fine motor DQ and CAT DQ, r=0.59, p<0.001 (Figure 1). Conclusion(s): Results suggest that in a population of children with trisomy 21 under 3 years old with high therapy enrollment and medical complexity, parent report of fine motor skills is moderately predictive of tested visual motor skills. Parent report of skills of children with trisomy 21 receiving therapy may be more accurate than previously suggested. Reliability of parent report should be considered when determining need for and progress in therapies. Future study in a broader population of children with trisomy 21 is needed.
Figure 1. Correlation between Ireton fine motor DQ and CAT (visual motor) DQ
Authors/Institutions: Sarah Safdar, Saint Louis University School of Medicine, St. Louis, Missouri, United States; Monique Gandawidjaja, Saint Louis University School of Medicine, St. Louis, Missouri, United States; Paula Buchanan, Saint Louis University, Saint Louis, Missouri, United States; Jennifer Heithaus, Saint Louis University School of Medicine, St. Louis, Missouri, United States