Abstract
In the U.S., patients who undergo fetoscopic laser photocoagulation (FLP) for twin-twin transfusion syndrome (TTTS) may travel great distances for care. Many cannot return to study sites for evaluation due to geographic location. We used internet-based Ages and Stages Questionnaire (ASQ-3) surveys to collect parent-reported outcomes in children treated for TTTS. Survey of patients residing in 23 different U.S. states who underwent FLP for TTTS or TAPS at a single center from 2013 until 2019. Patients with ≥ 1 neonatal survivor were invited to complete the ASQ online if their child was between 2-60 months corrected age. Repeat survey was performed after 12 months. ASQ scores indicating typical development or improvement after 1 year were classified “Favorable”. Scores indicating atypical development or decline were classified “Unfavorable”. Comparative statistics were performed including stratified analysis of results by ASQ domains. 276 mothers met inclusion criteria, of which the ASQ was completed by 81 patients. After 12 months, 61 patients were eligible for repeat ASQ, of which 31 responded (follow-up rate of 51%, total 58 repeat child assessments). Median pediatric age of responders at initial assessment was 20.0 (IQR, 8.5 – 39.0) months. Among non-responders, children were older at follow-up (p <0.001) and more likely to be from the Southern U.S. (p=0.002).(Table 1) Among children who repeated the ASQ, early gestational age and the loss of a co-twin was associated with “Unfavorable” composite scores. Similar findings occurred at the individual domain level assessment of Gross Motor, Problem Solving and Personal-Social skills.(Table 2) This is the first successful attempt to use internet-based technology to assess long-term pediatric outcomes via the ASQ-3 in a U.S. cohort of children treated with FLP for TTTS. Prematurity and co-twin demise appear to be the greatest risk factors for abnormal childhood development.View Large Image Figure ViewerDownload Hi-res image Download (PPT)
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