Key points

Introduction

Given the advances in the management of pediatric-onset spinal cord injury (SCI), most children with SCI will go on to live long lives. Successful transition to adulthood is a critical developmental milestone. This process of transition to adulthood, however, can be particularly challenging for adolescents and young adults with SCI, requiring navigation of their condition and management in addition to normative developmental tasks. Furthermore, the transition to adulthood occurs across multiple life domains such as education, employment, and health care. Thus, this developmental period is characterized by a lot of instability and complexities, as youth are simultaneously navigating shifting roles across a variety of contexts. This paper provides an overview of recent research on transition outcomes and interventions for youth with SCI.

Youth with SCI, like all youth, go through a normative developmental transition period characterized by both an increase in managing activities of daily living independently as well as a loss of support and structures. The transition to adulthood is marked by the attainment of development milestones rather than chronologic age but typically occurs between ages 18 and 25 years. Examples of typical markers of adulthood include obtaining a driver’s license, graduating from high school, moving out of parents’ homes, and establishing romantic relationships. Cultural practices and expectations play a strong role in the transition process. Individual and familial diversity will dictate the markers that distinguish childhood from adulthood.

While facing the tumultuous tasks of typical adolescence, youth with SCI are also navigating the challenges of living with an SCI. A youth’s developmental trajectory is altered by the SCI such that the timeline and process of transition may differ from their uninjured peers. Depending on the timing of the SCI, youth may have to relearn skills they had previously attained. Moreover, management of SCI can disrupt or delay educational and social opportunities needed for skill development. For instance, many youth have missed school days and decreased participation in community activities, given their focus on rehabilitation. Moreover, attainment of some milestones, such as driving a car, may require additional resources (eg, adaptive driving evaluation and equipment) as well as costs to appropriately meet the needs of the youth with SCI. Thus, it is critical to routinely assess the achievement of developmental milestones and tailor the transition process to the youth’s SCI-specific needs and the family context.

Health care transition, defined as the planned and purposeful movement from pediatric to adult-oriented health services, is a priority domain for youth with chronic medical conditions such as SCI. Healthy People 2030 has a national goal to increase the proportion of adolescents who receive health care transition services. Professional bodies such as the American Academy of Pediatrics (AAP) have developed practice-based guidelines for the implementation of transition interventions in health systems. Because of the recognition that transition is a vulnerable developmental period and key for long-term outcomes, practitioners, researchers, and government agencies alike are monitoring transition outcomes and developing transition interventions.

Current evidence

A biopsychosocial framework helps to conceptualize the transition process in youth with SCI. The International Classification of Functioning, Disability and Health (ICF) developed by the World Health Organization is a classification system that contextualizes an individual’s functioning and disability in relationship to their environment. Within the classification, there are five central components of health and functioning:

• 1.
  

  Body functions—the physiologic and psychological functions of the body

  
  
• 2.
  

  Activities—the execution of activities of daily living

  
  
• 3.
  

  Participation—involvement in life domains and fulfillment of social roles

  
  
• 4.
  

  Environment—the physical, social, and institutional context. The aspects of society over which the individual has minimal influence.

  
  
• 5.
  

  Personal factors—individual qualities and identities

The dynamic interaction of these components is what determines functioning and life with SCI. In this paper, the authors apply the general of the ICF framework to their discussion of transition.

Body functions—physiologic

SCI is a chronic health condition that requires ongoing complex management, involving bowel and bladder programs, skin checks, modified diet, rehabilitation, exercise programs, and medication management. This complex management, coupled with a longer duration of living with SCI, places adolescents and young adults with pediatric-onset SCI at risk for a variety of medical complications and secondary health conditions as they progress into adulthood. ^, Notably, the process of transition from pediatric to adult health care services occurs during adolescence and young adulthood, a developmental stage when risk for medical nonadherence is at its height. This elevates the susceptibility to secondary health conditions even further due to medical nonadherence, a factor that can be potentially life-threatening for emerging adults with SCI. ^, Findings among adults with pediatric-onset SCI demonstrate the negative effects of secondary health conditions on physical, psychological, and social well-being, including increased prevalence of psychiatric conditions, diminished employment, and income, reduced social participation, lower rates of independent living, and reduced satisfaction with life. Secondary health conditions not only increase the likelihood of poor long-term outcomes but also may delay successful transition.

Although a comprehensive discussion of the various secondary health conditions is beyond the scope of this chapter, neurogenic bladder and bowel, along with pressure injuries and musculoskeletal/pain issues, are common secondary conditions. ^{, ,} The most frequently reported health complication for adults with pediatric-onset SCI is urinary tract infections (UTIs). In one sample, 71% endorsed at least one UTI in previous year. A primary goal of bladder/bowel management in SCI includes promoting community integration by achieving continence and effective emptying ; however, the prevalence of incontinence is common, with 38% and 14% of individuals with SCI experiencing at least one episode per month of incontinence of bladder and bowel, respectively. Maintaining continence is crucial, especially in adolescence, and interventions that increase youth’s independence in performing bladder and bowel care may improve outcomes and overall emotional functioning.

Because of impairments in mobility, living for a longer duration with the condition, and risk for a predominately sedentary lifestyle with minimal opportunities for aerobic exercise, individuals with pediatric-onset SCI are at increased risk for pressure injuries. Higher incidence of spine deformities and hip subluxation in those who sustained the SCI before the onset of puberty may contribute to a higher rate of pressure injuries among those with pediatric-onset SCI. Pressure injuries may directly influence participation in school or work, reducing quality of life. Thus, preventative strategies should be integrated into the transition plan for individuals with SCI.

Pain is a common and debilitating complication, affecting approximately half of individuals with pediatric-onset SCI. The experience of pain may further limit a person’s ability to participate in daily activities, leading to significant declines in overall health and well-being. Individuals with pediatric-onset SCI may be at increased risk for persistent pain due to the long-term experience of injury-related secondary health conditions, overuse syndromes, and skeletal changes secondary to the injury. ^, It is therefore imperative to initiate measures in childhood and adolescence that will minimize the occurrence of pain and overuse syndromes.

Peer interventions have emerged as a principal tool in promoting self-management skills in adolescents and youth with SCI. There is growing evidence that mentor/mentee relationships with individuals with a similar level of functional impairment increase skills related to SCI-specific self-management (ie, mobility and transfers). In one study, mentees had reduced functional disability after 24 months on self-report ratings, demonstrating the positive impact of peer relationships on physical health. Through interactions with peers, youth with SCI can receive practical advice and skills to navigate challenges they may encounter in adulthood.

Body functions—psychological

An SCI is a sudden life-altering stressor, one that necessitates adaptation and adjustment. An estimated 25% of individuals with SCI will develop symptoms of posttraumatic stress disorder (PTSD). At the same time, many youth with SCI will exhibit resilience and posttraumatic growth. In contrast to the elevated rate of PTSD among individuals with SCI, the rate of mood disorders among youth with SCI is on par with their same-aged peers. In a nationally representative study (before the COVID-19 pandemic), the prevalence of anxiety in youth was close to 9%. Similarly, in a sample of youth with SCI, 9% and 13.5% were over the clinical cutoff for anxiety and depression, respectively. Notably, the period of transition, given the many changes, may increase symptoms of anxiety, including fears about transferring care from a familiar pediatric provider. One study found that anxiety symptoms were negatively associated with transition readiness, suggesting a bidirectional impact of psychological factors on transition skills. The low prevalence of mood concerns for the SCI transition-age population is encouraging. Nonetheless, providers need to be mindful of identifying youth with SCI who would benefit from additional mental health support.

Given the increased stress embedded in the transition process, youth with SCI will need to rely more on coping strategies. One study found that youth with lower perceived transition readiness were more likely to use avoidant coping strategies. Such escape-oriented coping strategies, such as distraction, and wishful thinking, were associated with lower scores of quality of life and mood measures for adolescents with SCI, demonstrating the need to bolster adaptive coping strategies during transition.

The period from adolescence to young adulthood is often characterized by an increase in substance use and misuse. Substance use may be conceptualized as an avoidant coping strategy. In a study of adults with pediatric-onset SCI, regular alcohol, tobacco, and marijuana use was endorsed by 55%, 28%, and 10% of participants, respectively. In another study, 26% of adults with pediatric SCI engaged in substance misuse, with drugs more likely to be misused than alcohol. Compared with their noninjured counterparts, individuals with SCI had 4 to 7 times increased odds of having a diagnosed substance use disorder. Considering the heterogeneity of use patterns and the potential for misuse, providers should screen for patterns of use to make appropriate referrals.

Participation

A chief goal of rehabilitation is participation, defined as the engagement in meaningful activities outside the home. As youth transition to adulthood, their participation shifts, and they assume adult roles and responsibilities (ie, employee, civic member, or community leader). Participation tends to decline as youth enter adulthood, ^, with education and employment, the two main life domains.

Personal factors—disability identity

All adolescents face the developmental challenge of identity formation. Depending on the age of SCI onset, youth may need to readjust or adapt their identity following the injury. For youth with SCI, disability may be a salient aspect of identity, shaping how they see themselves, their bodies, their relationships, and their participation in society. Disability identity is how people make sense of their individual and collective identity. It is formed through modeling, peer relationships, and recreational activities. Youth with physical disabilities who participate in activities, such as adaptive sports leagues, describe greater perceived freedom to be themselves, engage in health-promoting behaviors, and feel less pressure to mask visible aspects of their disability. Participation in the disability community can also help youth with SCI accept their disability and have a more positive view of themselves.

Environmental factors—interpersonal relationships

The constellation of interpersonal relationships shifts during adolescence and young adulthood. Peer relationships start to have a significant influence on youth’s development, and youth are gaining more independence from their parents. Strong peer relationships not only enhance quality of life but also become an avenue for learning valuable life skills.

Even as the impact of peers increases for transition-age youth, parents/primary caregivers and other trusted adults continue to play an important role in youths’ lives. Parents provide practical assistance with completing activities of daily living, accessing resources for health management, instilling confidence in youth’s self-management skills, and navigating systems to achieve longer term goals (eg, living independently of parents). ^, They may promote treatment adherence through verbal reminders and procuring and administering medications. Many parents also have to adjust to an unexpected role of increased caregiving responsibilities for their child with SCI. Because of the demands of SCI management, parents may need more time off from work or may not be able to work and have less time to engage with friends and partners, which can result in increased stress on marital relationships and finances. Providers should, therefore, be mindful of the potential of caregiver stress and how that affects the transition of youth with SCI.

Another relationship milestone that often occurs during adolescence and young adulthood is dating, initiating romantic relationships, and forming stable partnerships. A study of adults with pediatric-onset SCI found that 21% of participants were parents, with most becoming parents after SCI. Findings from another study of adults with pediatric SCI reported that approximately half of participants were regularly engaging in some form of sexual activity. Romantic relationships are important to youth with SCI, and they may begin to include partners in their care by having them attend appointments and participate in caregiver training. Given that the social support system is likely to change during the transition period, providers need to engage family members, romantic partners, and other identified caregivers during the transition process.

Environmental factors—health systems and health care transition interventions

The organization of a health system shapes patients’ experience of the transition. To guide health systems in the integration of transition planning into their operations, the AAP, the American Academy of Family Physicians, and the American College of Physicians wrote a joint report with implementation guidelines and a template for a health care transition intervention in 2011. This expert consensus identified the following as essential components of transition preparation for youth with complex chronic medical conditions: assess patient’s current capacity related to health management, create a transition plan with family-centered goals, document progress in a transition plan, as well as coordinate care and scheduling of appointments with adult health care providers.

A burgeoning collection of research is demonstrating that many adolescents with chronic health conditions do not acquire transition readiness. National surveys reveal that one-third of youth with special health care needs receive adequate transition planning. Some posttransition youth with SCI described the transition process as disjointed and disconnected. For others, the transition to adult-oriented health care services is welcomed as a rite of passage and signal of maturity. Although the perspectives of transition are varied, there remains a broader system issue of lack of a structured approach to transition.

This process of health care transition can be hard due to cultural differences between pediatric and adult-oriented systems. Pediatric medical care for SCI is typically in an interdisciplinary team setting and parent supervised, which is distinct from adult-centered care that is typically specialty-specific and involves individuals taking responsibility for their care. The interdisciplinary structure involved in pediatric care allows all health providers to communicate about each case and potential medical complication and is associated with success and increased medical adherence. The fragmented and multiclinic approach typical within the adult health care setting, conversely, requires emerging adults with SCI to complete multiple transitions to adult health care, rather than just a singular transition. Thus, one of the most significant barriers to transition for individuals with pediatric-onset SCI is the lack of coordination and continuity of care from pediatric to adult health care services.

Although literature on health care transition interventions is rapidly increasing, to date, few studies have documented health care transition interventions for youth with SCI. Bray and colleagues used a participatory process to identify what youth with SCI and their parents desire most from a health care transition tool. The ideal health care transition tool was a one-stop shop educational resource that details the transition process, insurance changes, social services for youth with SCI, and community-based opportunities for youth to participate in employment and education. In another study, Baker and colleagues described two health care transition tools that are offered to youth with SCI in Australia from point of injury until age 18 years. The tools include a centralized document detailing past treatments, as well as a goal-setting document for families to identify their priorities in terms of functional domains. These studies demonstrate the importance of family-centered care and documentation to the transition process. Notably, youth with SCI expressed a desire to be guided through the health care transition tools by peers with SCI, highlighting the importance of peer support to successful transition.

Implementation of a health care transition intervention will require buy-in and support from medical systems as well as governmental and commercial health care plans. The literature is still developing as to what components of transition intervention are effective. In a recent systematic review, patient-level health care transition interventions included scheduling transition appointments, creating informational materials on the transition process, hands-on interventions to help with securing employment, and developing a transition plan. Provider-level interventions aimed to increase providers’ knowledge and comfort with supporting patients in transition. Health care transition interventions require involvement of all stakeholders, both patients and providers. Thankfully, there are several publicly available transition resources (ie, www.GotTransition.org/ ) that health systems can use to spur the development of a site-specific health care transition program.

Discussion

The transition to adulthood for youth with SCI is a dynamic and challenging period, one that is marked by changing roles across multiple systems, including social, education, health care and employment settings. Transition also occurs in a developmental period where youth identity is shifting. They are asking themselves, “who am I?” while adopting adult roles in the community, starting partnerships, and exercising independence from family of origin. In addition to these typical changes, youth with SCI must negotiate their health management and integrate their disability identity into their ideas of adulthood. These multiple changes are inherent in transition and make it a vulnerable time for youth and increases their risk of poor coping.

For providers who are guiding youth with SCI in the transition to adulthood, it is important to first assess existing transition-related skills and identify youth’s goals, keeping in mind that goals may change over time. Goals may relate to educational attainment, driving, independent living, employment, and family planning. Youth may be apprehensive to have these conversations with parents/caregivers present, so there should be space for youth to have one-on-one interactions with providers.

Youth with SCI express that they want to learn transition skills from peers with SCI. Peers, especially young adults who recently went through this developmental stage, provide an important insight and perspective of daily life with SCI. Thus, providers should consider connecting youth to young adults who may serve as mentors. Several studies on peer-led programs for youth with SCI reveal positive benefits in terms of securing employment, participation in adaptive sports, increased self-management skills, and sense of belonging. ^{, ,}

The transition to adult-oriented health care services is crucial and occurs across numerous domains ( Box 1 ). Yet, most youths with SCI are not receiving adequate health care transition services. A challenge to a more widespread implementation of health care transition interventions is the prevailing reimbursement structure where third-party payors and insurance providers offer little to no coverage for activities related to transition preparedness. In addition, youth with SCI may struggle with the difference in ethos between family-centered pediatric care and individual-oriented adult care. Health systems and medical providers need to shift their current practice and develop an explicit approach to transition for youth. Transition care coordinators play an integral role in facilitating successful transitions, including improving health outcomes and patient satisfaction as well as reducing health care costs and medical errors. Health systems should consider incorporating care coordination, centralized documentation of medical history, and family-centered goals into their health care transition intervention. Transition is after all the springboard for youth with SCI to achieve optimal rehabilitation outcomes, participate in their communities, and enjoy a positive quality of life.

Box 1

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