Considerations in Transition of Pediatric Neurology Patients to Adult Care
ABSTRACT
Background
Transition refers to the planned, coordinated movement of adolescents from the child- and family-centered environment of pediatric care to the adult healthcare system. A well-structured transition process is essential for ensuring adolescents with chronic health conditions continue to thrive in young adulthood. Poor transitions can lead to negative health outcomes, worsening of comorbidities such as anxiety and depression, and poorer psychosocial well-being.
Methods
This topical review combines literature from general pediatrics, adolescent medicine, general child neurology, and child neurology subspecialities to provide holistic recommendations for the transition of pediatric patients to adulthood.
Conclusions
Core principles of transition include starting transition planning early, creating individualized transition plans, providing support before transition, and ensuring ongoing support after transition to adult care. For adolescents with neurological conditions, additional considerations include recognizing that many childhood neurological disorders are now lifelong conditions, addressing the impact of varying levels of intellectual disability, reevaluating the diagnosis at the time of transfer, and establishing emergency care planning.
1 Introduction
As pediatric patients approach young adulthood, careful consideration must be given to their transition to the adult care system. The transfer of care is a distinct, one-time event in which responsibility shifts from pediatric to adult providers, whether an individual clinician or a specialized team [1]. However, transition is a more complex and multifaceted process; it is the purposeful, planned process that addresses the medical, psychosocial, educational, and vocational needs of adolescents and young adults as they grow and learn to live with their lifelong health condition [1, 2].
Adolescence is a critical developmental period during which individuals establish a clearer sense of identity and become more independent; an important step in this process is learning to manage their own health. It is essential that healthcare providers ensure a comprehensive and coordinated transition, as negative transition experiences have been shown to contribute to patient, caregiver, and/or family burden and distress [3, 4]. Poorly managed transitions place adolescents at risk for worsened health outcomes in adulthood, including the progression of comorbidities such as anxiety and depression, and worse psychosocial outcomes [5]. Although transition is recognized as an important aspect in the care of all adolescent patients with neurological conditions, clinicians may be unaware of the best practices for transition in neurology care contexts, and these practices may not be universally implemented. This topical review combines literature from general pediatrics, adolescent medicine, general child neurology, and child neurology subspecialities to provide holistic recommendations for the transition of pediatric patients to adulthood.
2 Transition “Best Practices” From the Pediatric Literature
Several pediatric conditions have developed an extensive body of literature on transition research, including diabetes mellitus [4, 6-10], cystic fibrosis [9, 10], congenital heart disease [11, 12], and organ transplantation, among others [13-15]. These studies can inform us of “best practices” that can be applied to childhood neurological conditions during the transition process.
A recent Canadian Paediatric Society statement [16] suggests that the core principles of transition include the following components: (1) start transition planning early; (2) create an individualized transition plan; (3) provide support before transition; and (4) ensure ongoing support after transition to adult care. Identifying a designated transition “champion”—a healthcare worker who takes responsibility for facilitating and coordinating the healthcare providers involved in a young person's care and ensuring effective communication throughout the process—is also suggested [16-18]. Ensuring a well-structured transition supports continuity of care, promotes independence, and helps mitigate potential challenges young adults may face in managing their health.
Patients with medical complexity, comorbid mental health conditions, or psychosocial concerns require more support in the transition process [19]. Similarly, facets of an individual's lived experience, such as socioeconomic status, culture, and geographic setting, must be considered during the transition process to ensure optimal health outcomes [16, 20].
2.1 Models of Care
Various models of transition care have been proposed [16, 21, 22]. Some models are based in adult hospitals, whereas others are based in pediatric hospitals. Most describe joint visits between pediatric and adult providers, as multidisciplinary care is a cornerstone of most published models and guidelines [16, 21-23]. Programs with multidisciplinary teams can include both pediatric and adult physicians along with allied health professionals, including mental health practitioners, dietitians, physical and occupational therapists, social workers, nurse educators, and peer advocates [23, 24]. As part of a multidisciplinary assessments, pediatric patients are assessed for readiness to transition, education, and skill development for self-management of a chronic condition.
The ideal number of “joint” multidisciplinary clinical visits is unclear. A review of pediatric transition programs found that the length of time spent in a transition clinic varied from 2–3 months to 1–2 years [23]. In a descriptive study of epilepsy transition clinics, Carrizosa and colleagues noted that typically 1–4 transition visits occur [22].
Some pediatric programs adopt a different model, that of a transition program with a “transition facilitator.” The facilitator could be a physician, a nurse with disease-specific knowledge, a social worker, a clinical psychologist, or an administrative project coordinator [23]. Meetings with the facilitator are offered as an appointment in addition to the patient's recurring clinic appointments. Multidisciplinary care is not necessary used in this facilitator model, with appointment coordination being a key component of the model. While many of these “transition facilitator” clinics occur at the same time as routine medical care clinics, others focus more on patient education and condition self-management, while still others primarily focus on promoting transition awareness and readiness [23].
When considering transition, it is vital that patients’ primary care providers are involved in transition discussions early in the process, as this has been associated with improved patient outcomes [25-27]. Ongoing dialogue between providers can help to facilitate a smooth handover and ensures continuity of care once patients transition fully to the adult healthcare system. Whenever possible, both pediatric and adult specialists should offer shared, supportive care during the period before and after the transition to ease the adjustment and promote continuity and secure attachment.
The transition process should occur over several years. Final transfer of care should ideally occur when a patient is medically stable, with necessary investigations or medication adjustments completed. In addition, it is vital that youth are active participants in their healthcare. Transition discussions should be initiated early (beginning at age 12 years [28, 29]) and conducted regularly, and youth should have access to their health records and medical information during the transition process to ensure adequate health literacy [30].
3 Costs of Transition
Few studies outline the costs of the transition process and the implications of poor transitions. Outside of child neurology, one study of sickle cell disease patients who transitioned to adult care found that transitioned patients received fewer transfusions and hydroxyurea, had less chelation therapy, had higher healthcare costs, and experienced more complications than pediatric patients [31]. However, the authors acknowledged that their findings may have been due to less than adequate transition practices. A study in British Columbia compared outcomes in renal transplant patients who attended a transition clinic (12 patients) versus a historical group who were transitioned before the clinic's existence (33 patients) [32]. The transition group had no deaths or loss of grafts, while among those who did not attend the transition clinic, three died and seven lost their graft. The total healthcare costs were the same for both groups [32].
With regard to pediatric neurology, Bent and colleagues examined transition of care for a cohort of patients with neurological physical disabilities but normal intelligence [33]. Compared with patients who were not involved in a transition program, youth with transition experience scored higher on a measure that assessed participation in society, with no difference in healthcare costs between groups [33]. This finding is particularly important in illustrating how costs to society go beyond simply healthcare utilization, and how healthcare utilization alone likely underestimates the societal impact of poor transitions in care. Cohen and colleagues also examined the costs of transition for various youth with chronic care needs [34]. When specifically examining patients with “complex” care needs (which would encompass neurology patients), they found that mortality did not increase after transfer and that healthcare costs actually decreased.
4 Transition Issues Specific to Pediatric Neurology
There are specific features of child neurology that may make transition particularly challenging [35]. Many neurological conditions have symptoms that change, evolve, or worsen over the life course. As a result, patients and families need to know how to monitor and track changes, be aware of when to seek help, and have to continuously learn how to best manage their condition. The literature on transition from various neurological conditions can provide us with insight on how to support transition for these patients.
4.1 The Importance of Considering Cognitive, Behavioral, and Mental Health Issues
Studies of epilepsy patients suggest that transition programs may protect adolescents from some negative outcomes associated with transfer, including treatment non-adherence, worsening epilepsy symptoms, mental health issues, lower educational achievement, unemployment, and social isolation [28, 36-38]. Despite this, in one community-based sample, only one-third of young adults reported having transition discussions with their healthcare provider before age 18 [39]. Similarly, a systemic review of transition in epilepsy [36]—looking at data from observational studies—found that historically, a minority of patients had a transition discussion or engaged with a transition program. In addition, behavioral and cognitive challenges had a greater impact on the transition process than the severity of epilepsy itself. Finally, anxiety and depression were frequent in youth with epilepsy, thus affecting the transition process [36]. Given these findings, it is critical to identify and address cognitive, behavioral, and mental health issues early in the transition process and to continue following them after transition.
The epilepsy literature also highlights differences between typically developing patients and those with intellectual disability (ID) in regard to transition [5, 28]. Typically developing adolescents prioritize seizure control, leading a “normal” life, and the importance of family and social support [5, 28]. However, for patients with moderate to severe ID, their family and caregivers are often more concerned with caregiver support and financial support, as well as education on insurance and funding programs [28, 40]. Such insights regarding the priorities and needs of families supporting adolescents with ID can inform approaches to supporting all families of patients in child neurology for whom parents or other caregivers will need to maintain an active role in the care of the child due to a combination of physical and/or intellectual disability.
As such, some have advocated for different transition streams for typically developing patients with epilepsy and those with ID [28]. However, it is important to remember that there can be a wide range of cognitive functioning in patients with an ID diagnosis. Patients with mild ID may be more capable of taking on responsibility for their own care, and this must be taken into account to ensure that these patients are given similar information that would be provided to patients with typical cognitive development [28]. Transition planning must be flexible so that each adolescent receives appropriate guidance and support tailored to their cognitive abilities and future healthcare needs.
4.2 Opportunities to Reexamine Diagnoses and Treatments
The transition to adult care presents a valuable opportunity for specialists to reassess a patient's diagnosis and treatment plan. Both the epilepsy [28] and movement disorder [41, 42] literature emphasize the importance of revisiting diagnoses during this period, as advancements in medical technology and treatment options may offer new possibilities. For example, in epilepsy, it is possible that patients may be candidates for epilepsy surgery, thus revealing another option for the advanced treatment of refractory cases. Similarly, in both epilepsy and movement disorders, the emergence of next-generation sequencing has led to the discovery of numerous genetic etiologies for these. Genetic investigations conducted before the availability of this advanced technology may no longer be conclusive and, where appropriate, should be repeated using state-of-the-art diagnostic tools to refine or confirm a patient's diagnosis and optimize their care [28].
4.3 The Implications of Disease Trajectories
For pediatric neuromuscular diseases (NMDs), specialists emphasize the need to approach these conditions as systemic diseases due to increasing life expectancy, the necessity of multidisciplinary and coordinated care, and the availability of new therapies [43, 44]. NMDs such as Duchenne muscular dystrophy (DMD) present unique challenges during transition, and there can be intense stressors during this time from both the psychological and physical perspectives. In many NMDs—DMD in particular—physical skills can be lost during adolescence and dependence on caregivers can increase [43, 45, 46]. Some patients may progress from breathing independently to requiring ventilatory support, adding to the complexity of their care. These challenges can heighten a sense of vulnerability at a developmental stage when most seek greater autonomy [46].
NMD specialists also emphasize the importance of emergency care planning as another key component of transition [43]. For certain patients, expedited interdisciplinary care in the emergency department is critical for survival during acute decompensation events (e.g., myasthenic crisis, adrenal crisis for those on systemic corticosteroids). To facilitate rapid intervention, specialists recommend developing emergency plans and using “emergency cards” that provide essential treatment guidelines for healthcare providers [47]. Proactive planning helps ensure that patients receive timely and appropriate care, reducing the risks associated with medical emergencies during and after the transition to adult care.
4.4 A Potential Missed Opportunity
Studies from the cerebral palsy literature have demonstrated that after patients with cerebral palsy transition, there is a gradual decrease in their overall use of healthcare services, including their visits to general practitioners, specialists, and other healthcare practitioners, such as physiotherapists, occupational therapists, and speech therapists [48, 49]. This suggests that unsuccessful transfer of neurology care may have implications for both their primary neurological condition and their overall health status.
5 Barriers to Transition in Pediatric Neurology
There are several barriers to implementing optimal transition practices for pediatric neurology patients. From an ideologic point of view, child neurologists themselves may be somewhat hesitant to transfer their patients. They typically have long-standing relationships with patients and their families, often knowing these youth since infancy. They may feel that they are better equipped to address not only the medical but also the educational, behavioral, and social needs of their patients [44].
Families may similarly be hesitant to move from the relatively comfortable and familiar pediatric environment to an adult-oriented program with potentially less support. For many families, transfer occurs at a time when other resources become scarce, including aging out of special education programs or insurance models [44].
Finding adult providers with expertise in pediatric-onset neurological conditions poses another challenge. For example, adult neurologists might not be as aware of less common antiseizure medications such as stiripentol, vigabatrin, and cannabidiol [50]. They may also lack the knowledge or capacity to monitor advanced therapies such as the ketogenic diet [50]. Adult providers may be hesitant to assume care for patients with complex medical and behavioral needs, further complicating the transition.
From a practical standpoint, integrating transition programs is difficult due to the separation of pediatric and adult healthcare systems. Pediatric and adult neurologists often work in different institutions, making coordination of care and handover challenging. Similarly, there may be insufficient space to operate transition clinics, especially when several practitioners are present, combined with patients who may require wheelchairs or other mobility aids. Some systems may not allow adult and pediatric neurologists to bill for the same patient being seen [24, 28]. In the same vein, multidisciplinary care has been acknowledged as being a key component in transition clinics [16, 18, 36, 43, 50]; however, this type of care comes at a financial cost. As such, it is vital to advocate to both government and private insurers regarding funding for multidisciplinary transition clinics.
Additional barriers exist for adolescents with neurological disorders and co-occurring IDs. For example, in patients with ID and behavior issues, it may be difficult to perform blood work, electroencephalography, magnetic resonance imaging, or other procedures due to patient cooperation. Some areas of adult hospitals, such as emergency departments, may not allow other family members at the bedside or in the examination room. Obtaining sedated magnetic resonance imaging can be increasingly difficult in the adult healthcare system, and this is often required for patients with ID [44]. Education regarding this patient population would need to occur in both the inpatient and outpatient settings of adult hospitals.
Finally, as mentioned above, new advances in targeted therapeutics for neurological diseases have resulted in longer life expectancies for pediatric patients. Even before these advances, changes in mortality from childhood neurological diseases increased years lived with neurological disability in children between 1990 and 2015 [51], necessitating a shift in how childhood neurological disorders are viewed. Thus, an overall redefining of pediatric neurological disorders as lifelong disorders requiring ongoing specialized care needs to be considered. To support this shift, childhood neurological disorders will need to be emphasized to a much greater extent in postgraduate training in adult neurology to ensure adult providers feel comfortable and competent in caring for these patients. This should continue to be emphasized in continuing medical education. Ideally, a reciprocal dialogue would be created wherein pediatric neurologists would inform their adult colleagues regarding best practices in this population; adult neurologists could then feed back to their pediatric colleagues regarding challenges faced after transition.
5.1 The Importance of the Pediatric–Adult Provider Relationship
As mentioned above, the relationship between the adult and pediatric neurology providers is key to ensuring a successful transition. To aid in this collaboration, some have suggested that pediatric neurologists provide written materials to their adult colleagues regarding rare diagnoses or uncommon treatments related to the patients who are transitioning [52]. Pediatric neurologists should also have a readily available list of adult colleagues who are willing and comfortable to see and assess transitioning patients. In addition, some transition clinics follow up with patients and families—either in person or via telephone—after the initial adult neurology appointment to ensure it was satisfactory, to answer any remaining questions, and to ensure that there is a proper “fit” between the patient/family and the adult provider [52].
6 Transition Recommendations
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Healthcare providers, healthcare institutions/organizations, and funding agencies should recognize that childhood neurological illnesses should now be considered lifelong disorders requiring ongoing specialized care.
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Start transition planning early.
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Assessment of a youth's self-management skills should begin at age 12 years (or at diagnosis if older) and continue on a regular basis.
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Transfer readiness should be reassessed regularly at scheduled visits beginning at age 13 years. Yearly planning sessions should address the adolescent's medical condition; current medications and potential side effects; signs and symptoms of concern; genetic counseling and reproductive implications of the condition; issues of puberty and sexuality; driving, alcohol and substance use, and other risks; and emotional/psychological concerns and wellness [29].
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Create an individualized transition plan, specific to each patient.
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Such plans should be co-created, documented, and shared within the circle of care [18].
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Ideally, transition plans should be developed on compatible electronic medical records.
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Care should be made to consider the needs of adolescents (and their families and caregivers) with varying levels of ID during the transition process.
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Clinicians must recognize youth as experts in their own healthcare.
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Clinicians should proactively seek their input regarding the timing, manner, and duration of transition care needed. Adolescents should have access to key information in their medical records during the transition process and be supported in acquiring health literacy.
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Adolescents should have a designated most responsible provider for the transition process.
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This provider works with the young person (and their parents and caregivers, where needed) to coordinate their care and provide support throughout the transition process and until the young person (and their parents and caregivers, where appropriate) confirms that the transition is complete [18].
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Pediatric specialists should involve an adolescent's primary care provider early in the transition process.
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Transition services for adolescents with complex care needs should be integrated into clinical care and performed by multidisciplinary teams.
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Specifically, caregivers should be given support navigating needed legal documentation (e.g., substitute decision-makers, power of attorney) as well as adult supports and services (including government grants/supports, respite).
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Adaptable program funding and physician compensation systems that support continuous, shared, and integrated care during the transition period are essential.
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Funding and payment models should be flexible regarding age cut-offs and shared care among pediatric and adult health services.
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Consider emergency care planning before transition.
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Provide support before transfer and ensure ongoing support after transfer, including assessment and management of psychosocial issues (mental health, quality of life, schooling, and employment).
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At the time of transfer, consider reassessing the diagnosis of the patient, particularly if previous genetic testing may be outdated.
Author Contributions
Asif Doja: conceptualization; writing – original draft. Katherine Muir, Megan E. Harrison, Sarah Healy, Ashley Vandermorris, and Alene Toulany: writing – review and editing.
Conflicts of Interest
The authors declare no conflicts of interest.
