Factors impacting surgical decision making between prenatal and postnatal repair for myelomeningocele

Abstract

Objectives: To determine factors influencing patients to choose prenatal or postnatal repair of their child's myelomeningocele (MMC) when both treatment options are offered. Methods:We distributed a retrospective survey via email and social media to parents of children with MMC who were offered both prenatal and postnatal surgery as intervention options.Results: A total of 127 surveys met all inclusion criteria. The majority of responders considered partner's opinion (85%), maternal risks of prenatal surgery (71%), and risk for preterm labor (76%) as influencers. Financially, the costs of childcare (39.4% postnatal, 13.8% prenatal, p = 0.002), relocation (57.6% postnatal, 36.2% prenatal, p = 0.019), and travel (51.5% postnatal, 33% prenatal, p = 0.033) were more influential for the postnatal group while insurance coverage (36.4% postnatal, 68.1% prenatal, p = 0.003) was more influential to the prenatal group. Of the medical factors, the consideration of maternal risk for transfusion was different between surgical groups (39.4% postnatal, 18.1% prenatal, p = 0.015). The open responses suggest that both surgical groups found the quality of life for the baby to be significant to their decision-making.Conclusions: These findings should guide providers to tailor counseling to patient's needs. Comprehensive counseling should include information on financial resources, referral to financial counselors, and psychosocial support services. Key pointsWhat is already known about this topic? � Prenatal surgery to repair myelomeningocele has improved outcomes for children based on results of the 2011 MOMs trial � Although prenatal surgery is associated with improved outcomes for the fetus some patients still opt for a postnatal repair when eligible for a prenatal repair � Patients face considerable challenges when making surgical decisions including familial influences, social influences, and financial influences

Postnatal Myelomeningocele Repair in the United States: Rates and Disparities Before and After the Management of Myelomeningocele Study Trial

“…21 A survey of parents to children with MMC cited insurance coverage as the most common influencer of fetal over postnatal intervention, with partner's opinion and maternal risks as common concerns in the group opting for postnatal repair. 19 Even for those with access to the fetal option, the most common exclusion factor in the MOMS trial was maternal obesity, which itself is also a risk factor for neural tube defects. 12,13 Obesity, a growing epidemic in the United States, has a demonstrated relationship to socioeconomic factors and is highly prevalent in lower-income individuals.…”

“…17,18 Some reports demonstrate significant associations between social determinants of health and choice of approach. 19-22…”

“…17,18 Some reports demonstrate significant associations between social determinants of health and choice of approach. [19][20][21][22] Although single centers have reported differences in postnatal repair cohorts, a comprehensive, updated national examination of the trajectory of MMCr volumes and characteristics of patients still receiving postnatal MMCr is absent. We analyzed national trends in postnatal MMCr rates in the decades before (2000-2010) and after (2011-2019) the MOMS study.…”

Epidemiology and morbidity of spina bifida in Hispanic Americans: a systematic review

“…Among participants without insurance, 83.3% reported the cost of travel to the centre or hospital as a significant financial factor influencing their decision. 53 Furthermore, obesity may be a disqualifying factor; body mass index >35 was an exclusion criterion for the MOMS and obesity was significantly associated with mothers of HSB. 25 47 Lack of cultural competency and language differences were commonly cited as barriers to undergoing prenatal surgery.…”

Prenatal predictors of ambulation without assistance by 30 months of age in children following prenatal repair of open spina bifida, a systematic review and meta‐analysis

“…7 Independent community ambulation is of significant concern to OSB patients and is one of the primary reasons families opt for prenatal repair. 8 In addition, considering the importance of ambulatory outcomes, parents often inquire about predictors of ambulation to weigh the benefits of surgery against the maternal risks associated with prenatal uterine surgery. Therefore, evaluating mobility predictors is of vital importance in the post-MOMs era.…”