Table 2, continued
Age group	Guidelines	Evidence
6–12 years 11 months	1. It is recommended that the Spina Bifida Care Coordinator provide developmentally appropriate care education across spectrum of symptoms and conditions related to Spina Bifida to better empower children and their families to manage their own care and be able to recognize complications and emergencies. Identify and/or improve gaps in the family knowledge base specifically related to the school age period (mobility progress, skin inspection, bowel and bladder care, academic/cognitive development, school and social functioning, 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 monitor primary school functioning and update school education and health plans. Encourage participation in age-appropriate activities outside of school with peers, with and without Spina Bifida. Encourage participation in activities such as camps or special family weekends that provide safe places to develop peer relationships with children who may have similar medical challenges [13].	Clinical consensus, Appendix: Early Intervention Services, Individualized Educational Plans (IEP) and 504 Plans [13]
	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 is up-to-date on all sub-specialty care visits, imaging, monitoring, and equipment needs, where appropriate. This may include 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. Assess for depression and anxiety and assist with referrals to mental health and social services when appropriate.	Clinical consensus, Mental Health Guidelines
	5. It is recommended that the Spina Bifida Care Coordinator should work with the child, his or her family and Spina Bifida team members and therapists to start progress on self-management goals and education. Monitor family progress in self-management at regular intervals and clinic visits. Engage the school nurse to help facilitate self-management and independence [14]. Teach self-advocacy and encourage the child to participate as much as possible in his or her own self-management [15].	[14, 15] Self-Management and Independence Guidelines
	6. 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. The Spina Bifida Care Coordinator should use two-way communications to identify and address medical concerns and obtain updated records from the primary care provider and/or medical home such as immunizations, growth charts, developmental screenings, and other materials [4, 11].	[4, 11]
	7. 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 and monitor family needs and prescriptions for durable medical equipment, supplies, and medications, as needed [11, 16].	[11, 16]
13–17 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 better empower children and families to manage their own care and recognize complications and emergencies. Identify and or improve gaps in the family knowledge base specifically related to the teenage age period (mobility progress, skin inspection, bowel and bladder care, sexuality, academic/cognitive development, social functioning at school and with peers, high risk behaviors, 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 monitor secondary school functioning and update the school education and health plan so that it includes preparation for college or other higher education opportunities. Encourage participation in age-appropriate activities with peers outside of school. Where appropriate, provide information for driver education and training programs for the teenager with Spina Bifida.	Clinical consensus
	3. It is recommended that the Spina Bifida Care Coordinator communicate with the family and multidisciplinary Spina Bifida care team to ensure the individual 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 when needed [2, 12].	[2, 12]
	4. 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. The coordinator should use two-way communications to identify and address medical concerns and obtain updated records from the primary care provider such as immunizations, growth charts, developmental screenings, and other materials [4, 11].	[4, 11]