Intrauterine closure of myelomeningocele is associated with superior long-term quality of life than postnatal closure: a single-center study

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OBJECTIVE

The Management of Myelomeningocele Study (MOMS) established several important benefits of myelomeningocele fetal closure, including decreased need for shunting at 30 months. However, the effects of fetal closure on long-term quality of life (QOL) have not been studied. In this study, the authors aimed to analyze the differences in long-term QOL between children treated with intrauterine repair and those treated with postnatal repair.

METHODS

Caregivers of children treated with either intrauterine or postnatal closure at a tertiary acute care hospital between 1997 and 2003 were contacted to participate. The Pediatric Quality of Life Inventory (PedsQL 4.0) and a surgical history questionnaire were administered over the phone. Responses to the QOL survey were reverse scored and linearly transformed to a 0–100 scale, with a higher score indicating better QOL. The Mann-Whitney U-test was used to analyze differences in means.

RESULTS

Seventy-four children had MMC repair between 1997 and 2003. Twenty-three (31%) of the patients’ families responded to the PedsQL 4.0 questionnaire. Of these 23 children, 11 had intrauterine closure and 12 had postnatal closure. The intrauterine group did not differ in age (median [IQR] 17 years [14–17 years] vs 15 years [14–19 years], p = 0.926), sex (27.3% vs 41.7% male, p = 0.469), or lesion level (p = 0.199) from the postnatal group. Fewer patients in the intrauterine group underwent neurosurgical procedures than those in the postnatal group (55.6% vs 100%, p = 0.018). However, of the children receiving neurosurgical procedures, there was no difference in the number of procedures between the intrauterine and postnatal groups (median [IQR] 4 [2–10.5] vs 2.5 [1.75–6.25], p = 0.458). There was no difference in the percentage of children receiving nonneurosurgical procedures between the two groups (100% vs 100%, p > 0.99). Children who underwent intrauterine closure had significantly higher psychosocial health (median [IQR] 70.0 [56.7–83.3] vs 55.0 [42.1–60.0], p = 0.015) as well as total QOL (median [IQR] 56.5 [55.4–81.5] vs 49.5 [32.9–59.0], p = 0.019) than children with postnatal closure. Physical health was not significantly different between the two groups (median [IQR] 62.5 [37.5–78.1] vs 39.1 [18.8–59.4], p = 0.108).

CONCLUSIONS

Relative to postnatal closure, children who underwent intrauterine closure of MMC demonstrated better long-term QOL as measured by psychosocial and overall QOL metrics. Given that not all medical and socioeconomic confounders were adjusted for due to the low sample size, validation of these results in a larger population and across multiple centers is needed.

ABBREVIATIONS MMC = myelomeningocele; MOMS = Management of Myelomeningocele Study; PedsQL 4.0 = Pediatric Quality of Life Inventory; QOL = quality of life.

Article Information

Correspondence Michael C. Dewan: Vanderbilt University Medical Center, Nashville, TN. michael.dewan@vanderbilt.edu.

INCLUDE WHEN CITING Published online May 17, 2019; DOI: 10.3171/2019.4.PEDS18770.

Disclosures The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper.

© AANS, except where prohibited by US copyright law.

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