Table 2.

Summary of transition to adult care guidelines

Age Group	Guidelines	Evidence
0–5 years 11 months	1. Provide families with a realistic, long-term orientation that includes a probable trajectory for adult function and expectations to promote life-long optimal independence according to the child’s abilities.	[3, 5, 12–15, 18, 31, 45, 48, 49, 62, 68–70]
	2. Provide information for families regarding long-term financial, insurance, and supportive living planning based on the child’s probable trajectory into adult function.	[54, 64, 68]
	3. Consider regular evaluation of social determinants of health and immigration status (when applicable). Offer resources and navigation support if needs are identified as barriers can impact the individual’s long term functional trajectory and access to care.	[31, 50]
	4. Discuss plans regarding where individuals with SB can access comprehensive care throughout the lifespan including the transition to adult care.	[3, 56, 63]
6 years–12 years 11 months	In addition to the above,1. Review the clinic’s transition policy with patients and families between ages 12–14.	[1, 10]
13–17 years 11 months	1. Consider having a designated transition clinic or care coordinator to support transition planning and coordination acknowledging that young adults may need ongoing support throughout hand-off and transfer to adult care.	[2–4, 6, 7, 26, 52, 71, 76, 78, 82, 84]
	2. Provide families with a realistic, long-term orientation that includes a probable trajectory for adult function and expectations to promote life-long optimal independence according to the child’s abilities.	[3, 12–18, 21, 45, 46, 49, 51, 55, 56, 68–70]
	3. Promote participation in self-advocacy opportunities such as IEP meetings. Consider neurocognitive assessment to identify cognitive, adaptive, or learning support needs if knowledge or skill gaps are identified.	[8, 34, 48, 57, 65, 66]
	4. Consider regular evaluation of social determinants of health and immigration status (when applicable). Offer resources and increased navigation support if needs are identified as barriers can impact the individual’s long term functional trajectory and access to care.	[14, 26, 43, 47, 51–56, 68]
	5. Discuss transition planning with adolescent and family throughout adolescence ensuring that the adolescent’s and family’s views and preferences are considered in transition planning. Transition planning should include:
	a.  Expectations of when the transfer to adult care will occur based on the individual’s health condition, insurance/funding, cognitive development, and personal/family needs.	[1, 3, 7, 26, 34, 71]
	b.   Expectations of who will provide care throughout the transition process. Often multidisciplinary clinics are not available for adults; thus, a primary care medical home or physiatrist practice may be best to provide comprehensive SB management for adults. Urologists often play an important role in facilitating transition to adult-centered care as well.	[3, 7, 33–41]
	c.  Long-term financial, insurance, and supportive living (housing and transportation) plans, based on the individual’s current needs and probable trajectory of adult function. Information regarding the Social Security Administration’s Disability Determination Services before age 18, as applicable.	[14, 56]
	d.   Information regarding the adolescent’s education and employment needs, such as vocational rehabilitation services, school transition planning as part of the IEP, and adaptive vocational needs.	[5–7, 20, 30, 50, 57–59]
	e.   Preparation for decision-making supports and modalities that maximize the individual’s ability to participate in decisions for themselves once they are age 18, such as a medical power of attorney, supportive decision-making, or guardianship. Referral to medical legal partnerships may be needed.	[24, 34, 49, 58, 60]
	6. Create medical summary including past medical and surgical history, current care plans, medications, allergies, vaccines, and current providers	[1, 10]
	7. Regularly assess self-management independence throughout transition using a validated tool such as the TRAQ-SB. Discuss the results with the adolescent and family and set realistic goals to improve independence. Emphasize that self-management development is a gradual, iterative process.	[17, 26, 37, 42, 43, 46, 60, 66, 67]
	8. Optimize bowel and bladder continence and independent management as continence is a major factor in promoting life-long social participation, quality of life, and education and employment opportunities.	[11, 31, 36, 42–45, 58, 59, 72]
	9. Designate time alone with the adolescent for at least part of their visit, if developmentally appropriate.	[1, 10]
	10. Ensure patient-centered and developmentally appropriate preventative and chronic condition management services are provided throughout transition. Topics to particularly address in this age group include bowel/bladder management, skin health, sexual health and function, mental health, healthy weight, and adaptive equipment/supplies to maximize independent function.	[10, 61, 73]
	11. Patients and families should know the signs, symptoms, and action steps to manage these common SB-related complications: shunt malfunction, urinary tract infection, constipation, and skin ulcers. These management plans should be included along with a medical summary to hand-off to adult providers.	[24, 41, 61, 72]
	12. Prepare a hand-off packet that includes the medical summary, action plans, supply/equipment, and other important care coordination information to handoff to adult providers. Adult providers should include a primary care physician, neurosurgeon (if shunt or other neurosurgery history), urology if neurogenic bladder, and physiatrist if ongoing mobility management needs.	[1, 10, 79, 80, 83]
Ages 18+	1. Provide families with a realistic, long-term orientation that includes a probable trajectory for adult function and expectations to promote life-long optimal independence according to the individual’s abilities.	[3, 12–15, 18, 52, 53, 68–70]
	2. Consider regular evaluation of social determinants of health and immigration status (when applicable). Offer resources and increased navigation support if needs are identified as barriers can impact the individual’s long term functional trajectory and access to care.	[31, 55, 68]
	3. Optimize bowel and bladder continence and independent management as continence is a major factor in promoting life-long social participation, quality of life, and education and employment opportunities.	[6, 27, 31, 32, 57–59, 72, 74]
	4. Regularly assess self-management independence throughout transition using a validated tool such as the TRAQ-SB (validated up to age 25). Discuss the results with the adolescent and family and set realistic goals to improve independence. Emphasize that self-management development is a gradual, iterative process.	[17, 37, 42, 43, 46, 57, 60, 66, 67, 75]
	5. Promote on-going collaboration between pediatric/adult care providers and patients/families to improve the transition process and promote best care practices. Often multidisciplinary clinics are not available for adults; thus, a primary care medical home or physiatrist practice may be best to provide comprehensive SB management for adults. Urologists often play an important role in facilitating transition to adult-centered care as well. Also important is identifying an adult neurosurgeon for ventricular shunt concerns.	[3, 7, 31, 34–36, 38, 44, 50, 61, 62, 79, 80]
	6. Continue to assist with transition coordination as applicable including:a.   Assistance in identifying adult providers who accept the patient’s insurance and can assume their care.b.  Counselling regarding long-term financial, insurance, and supportive living plans (housing, transportation, etc.) based on the individual’s current needs and probable trajectory of adult function.c.  Information for education/employment transition support as applicable to the individual’s need such as vocational rehabilitation services, school transition planning, as part of the IEP, and adaptive vocational needs.d.  Decision-making supports and modalities that maximize the individual’s ability to participate in decisions for themselves, such as a medical power of attorney, supportive decision-making, or guardianship. Referral to medical legal partnerships may be needed.e.  Adult disability determination information if applicable.f.  Updating a medical summary including past medical and surgical history, current care plans, medications, allergies, vaccines, and current providers.	[2, 4, 11, 63–68, 77]
	7. Ensure patient-centered and developmentally appropriate preventative and chronic condition management services are provided throughout transition. Topics to particularly address in this age group include bowel/bladder management, skin health, sexual health and function, mental health, healthy weight, and adaptive equipment/supplies to maximize independent function	[24, 50, 53, 58, 60, 61, 66, 69, 70]

IEP: individualized education plan. SB: spina bifida. TRAQ-SB: Transition Readiness Assessment Questionnaire Spina Bifida.