BACKGROUND
In the U.S., patients with monochorionic diamniotic (MCDA) twins who undergo in-utero fetoscopic laser photocoagulation (FLP) for twin-twin transfusion syndrome (TTTS) may travel great distances for care. After delivery, many parents cannot return to study sites for formal pediatric evaluation due to geographic location and cost.
OBJECTIVE
To collect long-term pediatric outcomes in patients who underwent FLP for TTTS.
METHODS
We assessed the feasibility of using an internet-based survey designed in REDCap to collect parent-reported outcomes in children treated for TTTS at a single center during 2011-2019. Patients with ≥ 1 neonatal survivor were invited via email to complete three possible questionnaires: CSQ, child status questionnaire; FCQ, fetal center questionnaire; ASQ®-3, ages and stages questionnaire; M-CHAT-R/F, modified checklist for autism in toddlers; TYQ, thank you questionnaire. The R programming language was used to automate survey distribution, scoring and creation of customized reports. The survey was performed in 2019 and repeated after 12 months in 2020.
RESULTS
A total of 389 patients in 26 different states and 2 international locations had an email address on file and received an invitation in 2019 to complete the survey (median pediatric age 48.9 months [range 1.0 – 93.6]). Among surveyed mothers in 2019, the overall response rate was 37.3%, and the questionnaire completion rate was 98%, 87.8%, 71.1%, 86.4% and 74.3% for the CSQ, FCQ, ASQ®-3, M-CHAT-R/F and TYQ respectively. In 2020, the overall response rate was 57.8%, and the questionnaire completion rate was 96.4%, 91.1%, 86.1%, 91.7% and 80.4% for the CSQ, FCQ, ASQ®-3, M-CHAT-R/F and TYQ respectively.
CONCLUSIONS
This is the first study to employ both REDCap and computer automation to aid in the dissemination, collection and reporting of surveys to collect long-term pediatric outcomes in the field of fetal medicine.