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. 2024 Aug;40(8):2505-2514.
doi: 10.1007/s00381-024-06337-4. Epub 2024 Apr 22.

Evaluation of multidisciplinary high-risk pregnancy clinic for myelomeningocele

Luke Anderson  1 , Betsy Hopson  2   3   4 , Caroline Caudill  5 , Brandon G Rocque  6   5 , Jeffrey Blount  6   5 , Anastasia Arynchyna-Smith  6   5 , Jessica Thrower  6   5 , James Johnston  6   5 , Curtis Rozzelle  6   5
Affiliations

Evaluation of multidisciplinary high-risk pregnancy clinic for myelomeningocele

Luke Anderson et al. Childs Nerv Syst. 2024 Aug.

Abstract

Introduction: A cross-sectional study retrospectively evaluating the perceived usefulness of attending a multi-disciplinary, roundtable, educational prenatal clinic for mothers expecting children with myelomeningocele is presented.

Methods: Mothers who currently have children with SB completed a survey which evaluated their overall preparedness, spina bifida education, delivery plans, surgical expectations, and expectations in terms of quality of life and development. Open comments were also collected. Statistical analysis was performed to identify differences between those who attended prenatal counseling and those who did not.

Results: Approximately half of these mothers received some form of prenatal SB counseling. Mothers who attended prenatal counseling reported that they felt more informed and prepared throughout their pregnancy, during the delivery of their child and during their initial hospital stay than mothers who did not. They reported that the roundtable discussions were beneficial, and the education they received was useful in helping them form accurate expectations and feel more at ease.

Conclusion: This suggests that prenatal counseling and the High-Risk Pregnancy Clinic (HRPC) provides perceived utility to families and mothers and that the HRPC is an effective method of providing prenatal counseling to mothers whose unborn children have been diagnosed with myelomeningocele.

Keywords: Lifespan care; Myelomeningocele; Prenatal clinic; Prenatal counseling; Spina bifida.

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Conflict of interest statement

Authors do not have any conflicts of interest to report.

Figures

Chart 1
Chart 1
Screening Process Flow Chart
Fig. 1
Fig. 1
Participant responses to statements about how informed/prepared they felt for the delivery of their child (a), their initial hospital stay (b), postpartum complications (c), and the intensity of year 1 treatment (d) and how accurate they felt their expectation of their initial closure procedure (e) and their initial hospital stay (f) were to their lived experience, the chi-squared analysis comparing mothers who attended prenatal counseling to those who did not
Fig. 2
Fig. 2
Participant responses to statements about how they felt about various elements of their prenatal counseling experience
Fig. 3
Fig. 3
Participant responses to statements about how accurate they felt their expectations about their child were compared to their lived experience
Fig. 4
Fig. 4
Responses of participants whose child also had a diagnosis of hydrocephalus to statements about their expectations and experiences of life with hydrocephalus
Fig. 5
Fig. 5
Responses of participants who did not go through any prenatal counseling to statements about their level of preparedness
See this image and copyright information in PMC

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References

    1. Mohd-Zin SW, Marwan AI, Abou Chaar MK, Ahmad-Annuar A, Abdul-Aziz NM (2017) Spina bifida: pathogenesis, mechanisms, and genes in mice and humans. Scientifica (Cairo). 2017:5364827. 10.1155/2017/5364827. Epub 2017 Feb 13. PMID: 28286691; PMCID: PMC5327787 - PMC - PubMed
    1. Hopson B, Rocque BG, Joseph DB, Powell D, McLain ABJ, Davis RD, Wilson TS, Conklin MJ, Blount JP (2018) The development of a lifetime care model in comprehensive spina bifida care. J Pediatr Rehabil Med 11(4):323–334. Epub 20 2018. PMID: 30507593 - PMC - PubMed
    1. Farmer DL, Von Koch CS, Peacock WJ et al (2003) In utero repair of myelomeningocele: experimental pathophysiology, initial clinical experience, and outcomes. Arch Surg 138(8):872–878. 10.1001/archsurg.138.8.872 10.1001/archsurg.138.8.872 - DOI - PubMed
    1. Johnson MP et al (2016) The management of myelomeningocele study: obstetrical outcomes and risk factors for obstetrical complications following prenatal surgery. American journal of obstetrics and gynecology 215. 6:778-e1 - PMC - PubMed
    1. Kemmis S (ed) (1982) The action research reader. Deakin University Press, Geelong, Australia

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