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

Table 2, continued

Age group Guidelines Evidence
1–2 years 11 months
  • 1.
    It is recommended that the Spina Bifida Care Coordinator work with the family and the multidisciplinary Spina Bifida care team to ensure that the child with Spina Bifida is up to date on all sub-specialty care visits, imaging, monitoring, and equipment needs where appropriate. This may include assistance with insurance authorization or referrals [12].
Clinical consensus [12]
  • 2.
    It is recommended that the Spina Bifida Care Coordinator provide education across the spectrum of symptoms and conditions related to Spina Bifida to empower families and children to manage their own care and recognize complications and emergencies. The Spina Bifida Care Coordinator should also identify gaps in the family knowledge base.
Clinical consensus, Family Functioning Guidelines, Self-Management and Independence Guidelines
  • 3.
    It is recommended that the Spina Bifida Care Coordinator monitor and document family enrollment in and progress with therapies and treatments and encourage continued participation in early intervention services [13].
[13]
  • 4.
    It is recommended that the Spina Bifida Care Coordinator collaborate with team members to identify gaps or barriers to achieving the goals of the person’s care plan and assist with additional referrals as appropriate [12].
[12]
  • 5.
    When applicable, it is recommended that the Spina Bifida Care Coordinator update the 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 [11] records from the medical home, such as immunizations, growth charts, developmental screenings, and other materials [4, 11].
[4, 11]
  • 6.
    It is recommended that the Spina Bifida Care Coordinator begin emphasizing the child’s path towards independence with the family. Encouraging activities such as learning to help put on shoes and braces will promote greater independence and autonomy and promote further discussions of independence as the child ages.
Clinical consensus, Self-Management and Independence Guidelines
  • 7.
    It is recommended that the Spina Bifida Care Coordinator 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 when appropriate.
Clinical consensus, Mental Health Guidelines
3–5 years 11 months
  • 1.
    It is recommended that the Spina Bifida Care Coordinator provide developmentally appropriate care education across the spectrum of symptoms and conditions related to Spina Bifida to empower families and children to manage their own care and be able to recognize when complications and emergencies arise. The coordinator should also identify and/or improve gaps in the family knowledge base specifically related to the preschool period (mobility progress, skin inspection, bowel and bladder care, speech/cognitive development, and more).
Clinical consensus, Bowel Function and Care Guidelines, Mental Health Guidelines, Mobility Guidelines, Neuropsychology Guidelines, Skin (Integument) Guidelines, Urology Guidelines
  • 2.
    It is recommended that the Spina Bifida Care Coordinator prepare the family for early independence, entering preschool, and planning special education and health-related services in the school.
Clinical consensus
  • 3.
    It is recommended that the Spina Bifida Care Coordinator coordinate with the family and multidisciplinary Spina Bifida care team to ensure that the child with Spina Bifida is up-to-date on all sub-specialty care visits including, imaging, monitoring, and equipment needs, where appropriate, including assistance with insurance authorization when needed [2, 12].
[2, 12]
  • 4.
    It is recommended that the Spina Bifida Care Coordinator assess family dynamics in coping with the diagnosis and evaluate psychosocial stressors for the family [12]. The Spina Bifida Care Coordinator should also assist with referrals to mental health and social services when appropriate.
    When applicable, it is recommended that the Spina Bifida Care Coordinator update the primary care provider 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 person’s primary care provider such as immunizations, growth charts, developmental screenings, and other materials [4, 11].
[4, 11, 12] Clinical consensus, Mental Health Guidelines
  • 5.
    It is recommended that the Spina Bifida Care Coordinator serve the family as the lead contact person and information-provider for the multidisciplinary medical services for the child with Spina Bifida. The Spina Bifida Care Coordinator should monitor the family’s needs and prescriptions for durable medical equipment, supplies, and medications, as needed [11].
[11]