Patient Care Coordination: Spina Bifida with Hydrocephalus


Issue 1
June 04, 2021



Patient Care Coordination: Spina Bifida with Hydrocephalus (ICD – QO5.1)



jennifer dawson author Author: Jennifer Dawson, LMSW, CCM, Clinical Care Manager | Medicalincs



Disease Overview:

Myelomeningocele is one of the most severe forms of spina bifida which occurs when a fetus’ spinal cord fails to close during development (around 3-4 weeks into pregnancy). It is a neural tubal defect. Hydrocephalus is a symptom of spina bifida and is defined as excess cerebrospinal fluid that builds up within the ventricles of the brain and may increase pressure within the head.


spina bifida


Symptoms & Causes:

There is no one specific cause; Figure 1: Child with Spina Bifida however, there are several associations such as a
family history of neural tube defects and folate (B-9) deficiency. Some medications, diabetes, obesity, and increased body temperature are also risk factors.



  • • Walking and mobility challenges
  • • Orthopedic complications
  • • Bowel and bladder problems
  • • Shunt Malfunctions
  • • Meningitis
  • • Skin infections


What’s Working:

Attending the Spina Bifida Clinic at the Kennedy Krieger Institute (or your local clinic chapter) and seeing the multi-disciplinary team minimizes multiple appointments. When possible, it is helpful for the care coordinator to attend this clinic meeting with the patient. The coordinator can then assist the patient/family as needed with following up with any medical recommendations given by providers.


Condition Management Challenges:

There are limited adult providers who specialize in Spina Bifida which can complicate the transition from adolescence to adulthood. The transition from working with the patient’s primary caregiver/parent to the adult patient can also be challenging.


Care Management Opportunities:

Since shunt malfunction is a common occurrence in persons with Spina Bifida, care coordinators can encourage their patients to obtain routine MRIs as well as follow-up with specialty care (neurosurgery, orthopedics, urology, nutrition, etc.) It will be important to assess the patient’s level of independence with IADLs and ADLs to determine if additional help is required, such as a personal care attendant. The care coordinator can also assist with management of DME and DMS.


  • • Center for Spine Bifida and Related Conditions, Kennedy Krieger Institute (Baltimore, MD)
  • • Spina Bifida Association (nationwide, can also contact your local Chapter)



From the Frontline is a series of digital issues developed by Medicalincs Clinical Providers & Care Coordinators. The topics discussed are unique to the patient population served; and does not include any confidential information. Our experts will be sharing their insights based on their frontline experience in coordinating care across the care continuum. By sharing our knowledge, we promote the Medicalincs’ mission of breaking down healthcare management silos; to sustain systems, that save lives!



Medicalincs is a specialized healthcare advisory and management services firm that supports commercial and government health organizations.

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