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Does website‐based information add any value in counseling mothers expecting a baby with severe congenital diaphragmatic hernia?
Author(s) -
Engels Alexander C.,
DeKoninck Philip,
Merwe Johannes L.,
Van Mieghem Tim,
Stevens Petra,
Power Beverley,
Nicolaides Kypros H.,
Gratacos Eduard,
Deprest Jan A.
Publication year - 2013
Publication title -
prenatal diagnosis
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.956
H-Index - 97
eISSN - 1097-0223
pISSN - 0197-3851
DOI - 10.1002/pd.4190
Subject(s) - congenital diaphragmatic hernia , medicine , psychological intervention , randomized controlled trial , pediatrics , family medicine , fetus , surgery , pregnancy , nursing , genetics , biology
Objective We aimed to measure whether website‐provided information about congenital diaphragmatic hernia (CDH) and fetal therapy for severe cases provides added value compared with clinical counseling of parents. Methods This is a single center study in 102 couples who earlier opted for fetoscopic endoluminal tracheal occlusion (FETO) because of isolated severe CDH. They were asked to fill out an anonymized web‐based survey of 12 questions. Then, they were offered access to information on the web pages of the randomized Tracheal Occlusion to Accelerate Lung Growth (TOTAL) trial. One week later, their appreciation was measured again by a second questionnaire. Results Eighty‐two (80%) parents completed the first questionnaire, and 48 (47%) completed the entire survey. Several items became more clear to the parents after reading the website, such as the length of hospital stay (23.2% prior to web information, 60.4% after; P = 0.004), maternal risk, or the requirement of fetal anesthesia for FETO (43.9% resp. 79.2%; P = <0.001). Conclusion Complementing prenatal counseling on CDH and FETO by standardized information via website is perceived by parents as of added value. Maternal risks and the need for fetal medication need more clarification during the verbal counseling prior to prenatal interventions. © 2013 John Wiley & Sons, Ltd.