Abstract
Abstract BACKGROUND Pilot data showed developmental screening at Neurofibromatosis-1 (NF1) appointments is feasible to identify those needing neuropsychology or other referrals. Outcomes for this larger sample, many re-screened and/or seen for a neuropsychology visit, allow us to describe evolving clinical management. METHODS Screenings are offered annually (ages 2-17) at NF1 clinic appointments by the psychosocial team. Forty-eight early childhood patients (ages 2-5) were screened (54% male, 66.7% White,) while 35 were ineligible (e.g., recent neuropsychology visit) or experienced logistical barriers to screening. These groups did not differ in race/ethnicity, sex, glioma status, or childhood opportunity index. Parents completed well-validated measures including the PEDS: Developmental Milestones – Assessment Level (PEDS:DM), Modified Checklist for Autism in Toddlers, and/or an ADHD Rating for preschoolers. RESULTS On initial screens, 73.9% showed a delay of 25% or more on at least one PEDS:DM domain. Measures often aligned with clinical impressions (81.3%); however, when findings were contextualized with record review, there were false positives (8.3%) and negatives (10.4%). Screening identified emerging concerns in attention, fine-motor, and academic skills. Nearly half (47.9%) of patients had services at the time of screening, and new/modified recommendations were offered for 70.8%. One third were referred to our Education Coordinator or Social Worker for educational advocacy, support through Early Intervention/school evaluation, or outpatient referrals. Twenty-two (45.8%) were referred to Neuropsychology and 18 have now been seen (consultation, targeted testing, or comprehensive evaluation) to confirm or rule-out neurodevelopmental diagnoses (e.g., autism, ADHD, language or global delay) and further guide educational or intervention management. Follow-up screens (N = 21) have monitored developmental progress, previously subclinical symptoms rising to a significant level, and need for re-evaluation or additional services. CONCLUSIONS Multipronged systematic screening results in referrals for diagnostic clarity, guides transition from Early Intervention to school services, and supports dynamic management of changing concerns.
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have