JMIR Publications

ABSTRACT

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.