TY  - JOUR
AU  - Bergh, Eric
AU  - Rennie, Kimberly
AU  - Espinoza, Jimmy
AU  - Johnson, Anthony
AU  - Papanna, Ramesha
PY  - 2024
DA  - 2024/9/11
TI  - Use of Web-Based Surveys to Collect Long-Term Pediatric Outcomes in Patients With Twin-Twin Transfusion Syndrome Treated With Fetoscopic Laser Photocoagulation: Observational Study
JO  - JMIR Pediatr Parent
SP  - e60039
VL  - 7
KW  - automation
KW  - REDCap
KW  - data collection
KW  - reporting
KW  - response rate
KW  - response rates
KW  - survey
KW  - surveys
KW  - questionnaire
KW  - questionnaires
KW  - fetal medicine
KW  - pediatric outcomes
KW  - long-term outcomes
KW  - photocoagulation
KW  - twin
KW  - twins
KW  - blood
KW  - pregnant
KW  - pregnancy
KW  - pediatric
KW  - pediatrics
KW  - infant
KW  - infants
KW  - infancy
KW  - baby
KW  - babies
KW  - neonate
KW  - neonates
KW  - neonatal
KW  - newborn
KW  - newborns
KW  - maternal
KW  - in utero
KW  - TTTS
KW  - fetus
KW  - fetal
KW  - twin-twin transfusion syndrome
AB  - Background: In the United States, patients with monochorionic diamniotic 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: The aim of this study was to collect long-term pediatric outcomes in patients who underwent FLP for TTTS. Methods: We assessed the feasibility of using a web-based survey designed in REDCap (Research Electronic Data Capture; Vanderbilt University) 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 5 possible questionnaires: the child status questionnaire (CSQ); fetal center questionnaire (FCQ); Ages & Stages Questionnaires, Third Edition (ASQ-3); Modified Checklist for Autism in Toddlers, Revised With Follow-Up (M-CHAT-R/F); and thank you questionnaire (TYQ). The R programming language (R Foundation for Statistical Computing) was used to automate survey distribution, scoring, and creation of customized reports. The survey was performed in 2019 and repeated after 12 months in the same study population 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, IQR 1.0‐93.6 months). Among surveyed mothers in 2019, the overall response rate was 37.3% (145/389), and the questionnaire completion rate was 98% (145/148), 87.8% (130/148), 71.1% (81/100), 86.4% (19/22), and 74.3% (110/148) for the CSQ, FCQ, ASQ-3, M-CHAT-R/F, and TYQ, respectively. In 2020, the overall response rate was 57.8% (56/97), and the questionnaire completion rate was 96.4% (54/56), 91.1% (51/56), 86.1% (31/36), 91.7% (11/12), and 80.4% (45/56) for the CSQ, FCQ, ASQ-3, M-CHAT-R/F, and TYQ, respectively. Conclusions: This is the first study to use 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. 
SN  - 2561-6722
UR  - https://pediatrics.jmir.org/2024/1/e60039
UR  - https://doi.org/10.2196/60039
DO  - 10.2196/60039
ID  - info:doi/10.2196/60039
ER  -