Impact on family and parental stress of prenatal vs postnatal repair of myelomeningocele.
BACKGROUND
The Management of Myelomeningocele Study was a multicenter, randomized controlled trial that compared prenatal repair with standard postnatal repair for fetal myelomeningocele.


OBJECTIVE
We sought to describe the long-term impact on the families of the women who participated and to evaluate how the timing of repair influenced the impact on families and parental stress.


METHODS
Randomized women completed the 24-item Impact on Family Scale and the 36-item Parenting Stress Index Short Form at 12 and 30 months after delivery. A revised 15-item Impact on Family Scale describing overall impact was also computed. Higher scores reflected more negative impacts or greater stress. In addition, we examined Family Support Scale and Family Resource Scale scores along with various neonatal outcomes. Repeated measures analysis was conducted for each scale and subscale.


RESULTS
Of 183 women randomized, 171 women completed the Impact on Family Scale and 172 completed the Parenting Stress Index at both 12 and 30 months. The prenatal surgery group had significantly lower revised 15-item Impact on Family Scale scores as well as familial-social impact subscale scores compared to the postnatal surgery group (P = .02 and .004, respectively). There was no difference in total parental stress between the 2 groups (P = .89) or in any of the Parenting Stress Index Short Form subscales. In addition, walking independently at 30 months and family resources at 12 months were associated with both family impact and parental stress.


CONCLUSIONS
The overall negative family impact of caring for a child with spina bifida, up to 30 months of age, was significantly lower in the prenatal surgery group compared to the postnatal surgery group. Ambulation status and family resources were predictive of impact on family and parental stress.
Center for Fetal Diagnosis and Treatment, Children's Hospital of Philadelphia, and the Perelman School of Medicine of the University of Pennsylvania, Philadelphia, PA.
Ryan M
RM
Antiel
Center for Fetal Diagnosis and Treatment, Children's Hospital of Philadelphia, and the Perelman School of Medicine of the University of Pennsylvania, Philadelphia, PA.
N Scott
NS
Adzick
Biostatistics Center, George Washington University, Washington, DC.
Elizabeth A
EA
Thom
Biostatistics Center, George Washington University, Washington, DC.
Pamela K
PK
Burrows
Departments of Pediatrics and Surgery, and University of California-San Francisco Fetal Treatment Center, University of California-Davis, Sacramento, CA.
Diana L
DL
Farmer
Departments of Urology and Pediatric Surgery/Fetal Center, Vanderbilt University Medical Center, Nashville, TN.
John W
JW
Brock
Center for Fetal Diagnosis and Treatment, Children's Hospital of Philadelphia, and the Perelman School of Medicine of the University of Pennsylvania, Philadelphia, PA.
Lori J
LJ
Howell
Departments of Pediatrics and Surgery, and University of California-San Francisco Fetal Treatment Center, University of California-Davis, Sacramento, CA.
Jody A
JA
Farrell
Department of Physical Medicine and Pediatrics, University of Pittsburgh, Pittsburgh, PA. Electronic address: houtrow@upmc.edu.
Amy J
AJ
Houtrow
D000328:Adult; D017028:Caregivers / Q000523:psychology; D002675:Child, Preschool; D005260:Female; D005333:Fetus / Q000601:surgery*; D005865:Gestational Age; D006801:Humans; D007223:Infant; D008591:Meningomyelocele / Q000601:surgery*; D010290:Parents / Q000523:psychology*; D011181:Postnatal Care / Q000706:statistics & numerical data; D012307:Risk Factors; D013315:Stress, Psychological / Q000453:epidemiology*
family impact; maternal-fetal surgery; myelomeningocele; parental stress; spina bifida