A Qualitative Analysis of Patient and Caregiver Experiences with Myelomeningocele Through Online Discussion Boards

Overview

Journal Childs Nerv Syst

Specialty Pediatrics

Date 2024 Apr 5

PMID 38578480

Authors

Shriya Koneru

Sanjeevani Bhavsar

Sangami Pugazenthi

Gretchen M Koller

Sasidhar Karuparti

Michael R Kann

Jennifer M Strahle

Affiliations

Soon will be listed here.

Abstract

Purpose: Patients and caregivers impacted by myelomeningocele (MMC) use online discussion board forums to create community and share information and concerns about this complex medical condition. We aim to identify the primary concerns expressed on these forums with the goal of understanding gaps in care that may merit investment of resources to improve care received by this population.

Methods: Anonymous posts from online MMC discussion boards were compiled using internet search engines. Posts were then analyzed using an adaptation of the Grounded Theory Method, a three-step system involving open, axial, and selective coding of the data by two independent researchers to identify common themes.

Results: Analysis of 400 posts written primarily by parents (n = 342, 85.5%) and patients (n = 45, 11.25%) yielded three overarching themes: questions surrounding quality of life, a lack of support for mothers of children with MMC, and confusion with a complex healthcare system. Many posts revealed concerns about management and well-being with MMC, including posts discussing symptoms and related conditions (n = 299, 75.75%), treatments (n = 259, 65.75%), and emotional aspects of MMC (n = 146, 36.5%). Additionally, families, especially mothers, felt a lack of support in their roles as caregivers. Finally, in 118 posts (29.5%), patients and families expressed frustration with navigating a complex healthcare system and finding specialists whose opinions they trusted.

Conclusions: MMC is a complex medical condition that impacts patients and families in unique ways. Analysis of online discussion board posts identified key themes to be addressed in order to improve the healthcare experiences of those impacted by MMC.

References

Mohd-Zin S, Marwan A, Abou Chaar M, Ahmad-Annuar A, Abdul-Aziz N . Spina Bifida: Pathogenesis, Mechanisms, and Genes in Mice and Humans. Scientifica (Cairo). 2017; 2017:5364827. PMC: 5327787. DOI: 10.1155/2017/5364827. View

Copp A, Scott Adzick N, Chitty L, Fletcher J, Holmbeck G, Shaw G . Spina bifida. Nat Rev Dis Primers. 2016; 1:15007. PMC: 4898641. DOI: 10.1038/nrdp.2015.7. View

Koch V, Lopes M, Furusawa E, Vaz K, Barroso U . Multidisciplinary management of people with spina bifida across the lifespan. Pediatr Nephrol. 2023; 39(3):681-697. DOI: 10.1007/s00467-023-06067-w. View

Eriksson M, Bartonek A . Orthosis use and ambulation in adults with myelomeningocele after orthotic management from childhood. Prosthet Orthot Int. 2023; 48(2):196-203. PMC: 11005670. DOI: 10.1097/PXR.0000000000000279. View

Gilbertson K, Liu T, Wiener J, Walker Jr W, Smith K, Castillo J . Age-Specific Probability of 4 Major Health Outcomes in Children with Spina Bifida. J Dev Behav Pediatr. 2023; 44(9):e633-e641. PMC: 10926062. DOI: 10.1097/DBP.0000000000001218. View

Morais B, Solla D, Yamaki V, Ferraciolli S, Alves C, Dante Cardeal D . Brain abnormalities in myelomeningocele patients. Childs Nerv Syst. 2019; 36(7):1507-1513. DOI: 10.1007/s00381-019-04386-8. View

George E, MacPherson C, Pruthi S, Bilaniuk L, Fletcher J, Houtrow A . Long-Term Imaging Follow-up from the Management of Myelomeningocele Study. AJNR Am J Neuroradiol. 2023; 44(7):861-866. PMC: 10337608. DOI: 10.3174/ajnr.A7926. View

Mufti N, Sacco A, Aertsen M, Ushakov F, Ourselin S, Thomson D . What brain abnormalities can magnetic resonance imaging detect in foetal and early neonatal spina bifida: a systematic review. Neuroradiology. 2021; 64(2):233-245. PMC: 8789702. DOI: 10.1007/s00234-021-02853-1. View

Trigo L, Eixarch E, Bottura I, Dalaqua M, Barbosa A, De Catte L . Prevalence of supratentorial anomalies assessed by magnetic resonance imaging in fetuses with open spina bifida. Ultrasound Obstet Gynecol. 2021; 59(6):804-812. DOI: 10.1002/uog.23761. View

10.

Moreno-Oliveras L, Rodriguez-Mena R, Nahoda H, Chisbert-Genoves P, Ali Haji M, Llacer-Ortega J . Global neurosurgery: Reflections on myelomeningocele in the Zanzibar archipelago (Tanzania). World Neurosurg X. 2023; 20:100222. PMC: 10368924. DOI: 10.1016/j.wnsx.2023.100222. View

11.

Ozcan I, Yucel M, Kahveci H . Retrospective Examination of Infants With Congenital Neural Tube Defect. Cureus. 2023; 15(11):e48886. PMC: 10652651. DOI: 10.7759/cureus.48886. View

12.

Boaro A, Mahadik B, Petrillo A, Siddi F, Devi S, Chawla S . Efficacy and safety of flexible versus rigid endoscopic third ventriculostomy in pediatric and adult populations: a systematic review and meta-analysis. Neurosurg Rev. 2021; 45(1):199-216. PMC: 8827229. DOI: 10.1007/s10143-021-01590-6. View

13.

Warf B, Weber D, Day E, Riordan C, Staffa S, Baird L . Endoscopic third ventriculostomy with choroid plexus cauterization: predictors of long-term success and comparison with shunt placement for primary treatment of infant hydrocephalus. J Neurosurg Pediatr. 2023; 32(2):201-213. DOI: 10.3171/2023.4.PEDS2310. View

14.

Lu L, Chen H, Weng S, Xu Y . Endoscopic Third Ventriculostomy versus Ventriculoperitoneal Shunt in Patients with Obstructive Hydrocephalus: Meta-Analysis of Randomized Controlled Trials. World Neurosurg. 2019; 129:334-340. DOI: 10.1016/j.wneu.2019.04.255. View

15.

Bakketun T, Gilhus N, Rekand T . Myelomeningocele: need for long-time complex follow-up-an observational study. Scoliosis Spinal Disord. 2019; 14:3. PMC: 6407184. DOI: 10.1186/s13013-019-0177-3. View

16.

Siahaan A, Susanto M, Lumbanraja S, Ritonga D . Long-term neurological cognitive, behavioral, functional, and quality of life outcomes after fetal myelomeningocele closure: a systematic review. Clin Exp Pediatr. 2022; 66(1):38-45. PMC: 9815938. DOI: 10.3345/cep.2022.01102. View

17.

Brock C, Bergh E, Bartal M, Johnson A, Hernandez-Andrade E, Garnett J . The significance of hindbrain herniation reversal following prenatal repair of neural tube defects. J Neurosurg Pediatr. 2023; 32(1):106-114. DOI: 10.3171/2023.2.PEDS22457. View

18.

Bouras T, Sgouros S . Complications of endoscopic third ventriculostomy. World Neurosurg. 2012; 79(2 Suppl):S22.e9-12. DOI: 10.1016/j.wneu.2012.02.014. View

19.

Munoz J, Buskmiller C, Nassr A, Sanz Cortes M, Keswani S, King A . Ultrasound prediction of perinatal morbidity in fetal sacrococcygeal teratoma. Ultrasound Obstet Gynecol. 2024; 64(4):555-556. DOI: 10.1002/uog.27617. View

20.

Bruzek A, Koller G, Karuparti S, Varagur K, Dunbar A, Flanders T . MRI analysis of neurodevelopmental anatomy in myelomeningocele: prenatal vs postnatal repair. Ultrasound Obstet Gynecol. 2024; 64(3):362-373. DOI: 10.1002/uog.27586. View