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. 2020 Dec 22;13(4):499–511. doi: 10.3233/PRM-200738

Table 2.

Spina bifida care coordination guidelines

Age group Guidelines Evidence
0–11 months
  • 1.
    After the Spina Bifida diagnosis has been made, it is recommended that the Spina Bifida Care Coordinator should be readily available to the family to provide support [9] and education throughout the pregnancy. These consults may take place as part of a maternal fetal health visit in a high-risk pregnancy center. The goals of the consults may include to:
    • –
      assist the family with coping with the new diagnosis,
    • –
      provide overall education on what the family can expect ages 0–11 months and while in their stay in the neonatal intensive care unit (NICU) stay, and
    • –
      provide general information on the signs and symptoms related to Spina Bifida.
    The Spina Bifida Care Coordinator may assist in synchronizing prenatal visits for other subspecialties that could include neurosurgery, urology, and orthopedics. The primary role of the Spina Bifida Care Coordinator during this stressful time for families is to convey the message that the family is not alone because a well-prepared team will be on hand to provide them with the support they need to help care for their child [10].
 [9, 10]
  • 2.
    It is recommended that the Spina Bifida Care Coordinator should use the time during pregnancy or 0–11 months to introduce the family to the Spina Bifida clinic and multidisciplinary team (when one is available) and begin the process of arranging post-discharge follow-up. Through counseling and encouragement, the Spina Bifida Care Coordinator:
    • –
      assists the family to accept the diagnosis, and
    • –
      contacts the medical home of the family and infant with Spina Bifida and identifies the specific lead professional or nurse case manager who will serve as the point of contact for the family to provide education, resources, and support [10, 11].
 [10, 11]
  • 3.
    It is recommended that the Spina Bifida Care Coordinator provide families with a broad and appropriate early education across the spectrum of symptoms and conditions related to Spina Bifida. This may include educating the family on early urologic work-up and management and possibly teaching them about clean intermittent catheterization (CIC). Other topics may include education on latex allergy and precautions, education regarding early orthopedic interventions, and education to help families recognize potential neurosurgical complications.
 Clinical consensus, Latex and Latex Allergy in Spina Bifida Guidelines, Neurosurgery Guidelines, Orthopedics Guidelines, Urology Guidelines
  • 4.
    It is recommended that the Spina Bifida Care Coordinator work closely with the NICU staff to ensure that parents have the necessary skills and education for discharge and a smooth transition to home care.
 Clinical consensus
  • 5.
    It is recommended that the Spina Bifida Care Coordinator should communicate and collaborate between the family and the multidisciplinary and sub-specialty Spina Bifida team members to arrange and execute the child’s follow-up appointments, monitoring, and care plan [2, 12].
 [2, 12]
  • 6.
    When applicable, it is recommended that the Spina Bifida Care Coordinator should update the child’s primary care provider and/or medical home on the current care goals and recommendations of the Spina Bifida multidisciplinary care team. Use two-way communications to identify and address medical concerns and obtain updated records from the medical home, such as immunizations, growth charts, developmental screenings, and other materials [4, 11].
 [4, 11]
  • 7.
    When appropriate, it is recommended that the Spina Bifida Care Coordinator should refer families to early intervention services [10].
 Clinical consensus, Appendix: Early Intervention Services, Individualized Educational Plans (IEP) and 504 Plans [10]
  • 8.
    It is recommended that the Spina Bifida Care Coordinator make referrals to local Spina Bifida Association Chapters and parent support groups, as available.
 Clinical consensus
  • 9.
    It is recommended that the Spina Bifida Care Coordinator should monitor the parent’s and caregiver’s compliance with appointments, and problem-solve with them if non-compliance is noted.
 Clinical consensus
  • 10.
    When appropriate, it is recommended that the Spina Bifida Care Coordinator should assess family dynamics in how they are coping with the diagnosis, evaluate psychosocial stressors for the family, and assist them with referrals to mental health and social services professionals.
 Clinical consensus, Mental Health Guidelines