Table 2, continued
Age group	Guidelines		Evidence
13–17 years11 months	8.	Discuss sexuality, contraception (including latex allergy precautions), marriage, childbearing issues, genetic counseling, and folic acid supplementation.	Latex and Latex AllergyGuidelines [76] Men’s Health Guidelines [77] Sexual Health and Education Guidelines [78] Women’s Health Guidelines [79]
	9.	Assess individual and system barriers to self-management and transition from pediatric to adult health care (e.g., responsibility for health management, advocacy, assertiveness, and insufficient adult services).	Evidence [73, 80]
	10.	Encourage the use of technology to enhance self-management.	Evidence [38, 39, 40, 42, 81]
	11.	Share expectations and resources for future independent living, transition to college or employment.	Evidence [19, 24]
	12.	Provide consultation to adult providers with limited skill in providing care to those with congenital conditions such as spina bifida.	Evidence [73] Transition Guidelines [74]
18$+$ years	1.	Evaluate full responsibility for implementing condition-specific self-management behaviors in appropriate areas, as needed (e.g. managing medications, preventing complications, monitoring skin care, maintaining equipment, bowel and bladder care, and ability to make health care appointments).	Evidence [1, 17, 18, 23, 38, 60, 61, 65, 68]
	2.	Reinforce the need for daily skin assessment, given the high incidence of skin breakdown on lower extremities (e.g. due to poor fitting leg braces) and risk for wound-related hospitalization.	Evidence [38, 26, 36] Integument [Skin} Guidelines [70]
	3.	Evaluate if the adult has expanded self-management to encompass everyday living activities such as laundry, meal preparation, managing finances, making health care appointment, and ordering supplies.	Clinical consensus
	4.	Initiate a discussion and develop an action plans to address deficits in self-management skills, abilities, and behaviors as needed.	Clinical consensus
		• Use a valid and reliable instrument to assess self-management skills, abilities, and performance of self-management or independence behaviors over time in adults (Table 3).	Evidence [13, 60, 69, 75]
		• Support development of knowledge and skills necessary for self-management (e.g., self-efficacy, decision-making, goal setting, self-regulation, and communication).	Evidence [16, 64]
		• Evaluate and monitor cognitive functions, as they underpin decision-making and self-management.	Evidence [4, 24, 68] Neuropsychology Guidelines [63]
		• Assess the adult’s ability to use transportation; encourage enrollment in driver’s education (adaptive, if needed) if the adult possesses the necessary cognitive and motor abilities and has not done so already. If driving is not realistic, teach [or encourage the family to teach) the adult how to use transportation (e.g. public transportation, van services for individuals with disabilities, or other transportation options).	Clinical consensus
		• Evaluate the young adult’s ability to live independently and connect with him or her with housing resources, such as Centers for Independent Living.	Clinical consensus
	5.	Encourage the use of technology in developing basic self-management skills. For instance, using email, a personal online health record, or patient portal to contact the clinic coordinator and physician with questions. Offer alternatives if this form of access is not available or appropriate.	Clinical consensus
	6.	Encourage the use of technology programs to enhance self-management outcomes [e.g. using mobile health (mHealth) or telehealth tools to monitor skin breakdown or report response to medication for UTI].	Evidence [10, 38, 39, 40, 42, 82]
	7.	Expand the discussion of sexuality, contraception (including latex allergy precautions), marriage, childbearing issues, genetic counseling, and folic acid supplementation.	Sexual Health and Education Guidelines [78]
	8.	Expand the discussion on child rearing and parenting issues and resources as appropriate.	Clinical consensus
	9.	Discuss strategies for safe infant handling (e.g., holding an infant if you use a wheelchair or accessing a crib or car seat) with parents or expectant parents with mobility limitations.	Clinical consensus
	10.	Encourage involvement in empowerment activities and organizations (e.g., sports, mentoring, camps, and local, national and international spina bifida, and other disability organizations).	Evidence [11]
	11.	Support family functioning strengths related to self-management including family satisfaction and family resources.	Evidence [58, 75, 83]