Patient empowerment improves follow‐up data collection after fetal surgery for spina bifida: institutional audit

Objectives

To define and grade fetal and maternal adverse events following fetal surgery for spina bifida and to report on the impact of engaging patients in collecting follow-up data.

Methods

This prospective single-center audit included one hundred consecutive patients undergoing fetal surgery for spina bifida from the first onwards. In our setting, patients return to their referring unit for further pregnancy care and delivery. On discharge, referring hospitals were requested to return outcome data. For this audit, we prompted patients and referring hospitals for missing outcomes. Outcomes were categorized as missing, returned spontaneously or following additional request, and as either provided by the patients or referring center. Postoperative maternal and fetal complications until delivery were defined and graded according to the Maternal and Fetal Adverse Event Terminology (MFAET) and the Clavien-Dindo classification.

Results

There were no maternal deaths and seven (7%) severe maternal complications (anemia in pregnancy, postpartum hemorrhage, pulmonary edema, lung atelectasis, urinary tract obstruction, and placental abruption). No uterine ruptures were reported. Perinatal death occurred in 3% and other severe fetal complications in 15% (perioperative fetal bradycardia/cardiac dysfunction, fistula-related oligohydramnios, and preterm rupture of membranes <32 weeks). Preterm rupture of membranes occurred in 42% and overall, delivery took place at a median gestational age of 35.3 weeks [IQR 34.0-36.6]. Information following additional request, both from centers, but mainly through patients reduced missing data by 21% for the gestational age at delivery, by 56% for the uterine scar status at birth, and by 67% for the shunt insertion at 12 months. Compared to the generic Clavien-Dindo classification, the Maternal and Fetal Adverse Event Terminology ranked complications in a clinically more relevant way.

Conclusions

The nature and rate of severe complications were similar to those reported in other larger series. Spontaneous return of outcome data by referring centers was low, yet patient empowerment improved data collection.