Navigating Transition to Adulthood in Epilepsy Patients: A Multidisciplinary Approach

Abstract

The transition from pediatric to adult healthcare systems is a critical yet complex process for individuals with epilepsy, requiring careful attention to both medical and psychosocial aspects. This review highlights best practices and strategies to facilitate effective transitions, focusing on the roles of multidisciplinary teams, communication strategies, shared decision-making, and transition readiness assessment. Key topics include early and ongoing communication, promoting patient autonomy, addressing mental health comorbidities, and implementing transition readiness assessments such as the Epilepsy Transition Readiness Assessment Questionnaire (EpiTRAQ). Additionally, the review evaluates models for transition clinics, emphasizing the importance of sustainability, collaboration, and tailored interventions. By leveraging these insights, healthcare professionals can support young adults with epilepsy in achieving independence and optimal health outcomes as they navigate the challenges of transitioning to adult care.

Introduction

The transition to adulthood is a complex journey for adolescents and their families, especially for those managing chronic conditions like epilepsy. ¹ During this time, youth navigate identity development, emerging independence, and the added challenges of medication management, behavioral health, and developmental factors affecting decision-making and adaptive skills. ²

Healthcare professionals play a vital role in supporting the transition of people with epilepsy (PwE) to adult care systems, a process essential for their long-term well-being. ¹ Recognizing this, organizations such as the American Epilepsy Society (AES), American Academy of Neurology (AAN), and Child Neurology Foundation (CNF) have developed practice guidelines and tools to standardize and improve transition care.

This review offers actionable insights to help multidisciplinary healthcare teams support effective transitions for PwE. Drawing from the expertise of pediatric and adult practitioners, it explores key topics like communication strategies, medication considerations, decision-making ethics, transition clinic development, and the impact of Social Determinants of Health (SDOH) and Diversity, Equity, and Inclusion factors. With contributions from advanced practice providers, social workers, pharmacists, neuropsychologists, and neurologists, this review highlights best practices to facilitate seamless transitions to adult care for PwE.

The Transition From Pediatric to Adult Care

Healthcare transition is a comprehensive, long-term process that prepares and supports patients as they move from pediatric to adult healthcare. While this process may or may not involve a change in healthcare providers, ³ it typically spans several years and focuses on equipping patients with the knowledge, skills, and confidence to manage their health independently. It is important to distinguish between “transition” and “transfer” of care, as these terms are not interchangeable. Transition refers to the holistic process of preparing for and adapting to adult healthcare, encompassing patient education, communication, and gradual shifts in responsibility. Conversely, transfer of care is a single, definitive event that marks the formal handoff of a patient's care from one provider to another, signifying the culmination of the transition process. ⁴ While a transfer is an endpoint, the transition is an ongoing journey that ensures the patient is ready to navigate the adult healthcare system effectively and maintain continuity of care.

There are inherent differences between pediatric and adult health care models. Pediatric models provide family-centered care where family members and caregivers are involved in clinic visits and make treatment decisions together. In an adult model, the care is centered on the patient who is legally an adult and responsible for making their own treatment plan decisions. When the patient lacks decision-making capacity, guardians or legally authorized representatives (LARs) will continue to make decisions on their behalf. Multidisciplinary care is important in both adults and pediatrics, but the disciplines and issues are different. Pediatric providers focus on the patient's growth and developmental milestones. When patients transition to adult care, the focus continues on cognitive, behavioral, and psychiatric issues, but also expands to other considerations, such as pregnancy or long-term medication effects, such as osteoporosis. ⁵

A smooth transition is crucial to avoid gaps in healthcare continuity, worsening medical conditions, decreased treatment adherence, and increased reliance on hospitals, urgent care, and other healthcare services. A poor transition could also lead to greater dissatisfaction, hinder the youth's acceptance of their role in self-management, and result in incomplete integration into the adult model of health care. ³ Several common barriers including SDOH, timing, knowledge, psychological, clinical, and cognitive disability and behavioral disorders could impair the transition of care.^3,6,7

In 2016, a multidisciplinary panel with the CNF published a consensus statement about the transition, later backed by the AAN, the Child Neurology Society, the American Academy of Pediatrics, and the AES. This statement established eight common principles for a good transition: expectations, yearly self-management assessment, annual discussion of the medical condition and age-appropriate concerns, evaluation of legal competency, annual review of the transition plan of care, child neurology team responsibilities, identification of the adult provider, and completion of the transfer of care. ⁶ Other transition care models have subsequently emerged with similar themes. A notable example is the Got Transition Six Core Elements of Health Care Transition, ⁸ initially developed as three packages to assist with the transfer in a primary care setting, and later adapted to specialty practices.

Discussing Transition With Patients

Transition from pediatric to adult care often occurs during adolescence, a time marked by physical, emotional, and social development. For PwE, these years come with the added challenge of managing their condition. Some key recommendations can enable successful transition of care discussions.

Strategies for Healthcare Professionals

1. Start the Conversation Early: It is essential to begin transition conversations well before the patient reaches adulthood. The CNF recommends initiating these discussions between the ages of 12 and 14. ⁹ Early conversations can help patients and their families understand the nature of the transition and prepare for the increased independence required in adulthood. Healthcare professionals should create a supportive environment where patients feel comfortable expressing their concerns, questions, and anxieties.

2. Encourage Open, Patient-Centered Dialogue: Healthcare professionals need to encourage open-ended questions to create a safe space for patients and families. Conversations should be tailored to the patient's cognitive and emotional maturity, ensuring that the information provided is both understandable and relevant to their life stage. Both the patient and their family need to be involved in discussions, ensuring everyone is aligned on the transition goals. Patients may benefit from spending more time discussing their medical history, goals for care, and symptoms with their provider, as opposed to focusing on caregiver perspectives.

3. Promote Independent Health Management: A key component of the transition to adulthood is gradually shifting responsibility for healthcare tasks to the patient. Examples include encouraging patients to practice scheduling their own appointments, filling prescriptions, and completing medical documents with caregiver supervision. These activities help foster greater self-reliance in managing their epilepsy as they age. A gradual approach allows patients to build confidence and competence in their role as their own healthcare manager.

4. Involve a Multidisciplinary Team: Epilepsy can impact various aspects of a patient's life. Therefore, patients should have access to a range of specialists to support their transition to adulthood, including social workers, neuropsychologists, psychologists, occupational therapists, speech therapists, physical therapists, primary care providers, psychiatrists, and dietitians. A 2024 study revealed that adults with epilepsy often have significantly less access to specialized care compared to pediatric patients. ¹⁰ Thus, PwE should utilize these specialists while they are still receiving pediatric care. Accessing these specialists early in the transition process ensures that patients and families are well supported in the pediatric setting and beyond.

5. Address Career, Educational, and Legal Considerations: Implications of epilepsy on career paths, educational opportunities, and legal matters should be discussed. Healthcare providers should encourage patients to explore potential career options and understand how their condition might impact their work or academic life, including employment rights for individuals with disabilities. For many PwE, being able to drive is a significant milestone in achieving independence. Discussing the medical and legal requirements for driving with epilepsy, including potential restrictions, is an essential aspect of preparing patients for adulthood.

6. Prioritize Mental Health Support: Mental health should be recognized as an integral part of the transition process. Research shows that between 30% and 50% of individuals with epilepsy have co-occurring mental health conditions, such as depression or anxiety.^11,12 During the transition to adulthood, addressing mental health needs becomes even more critical, as these conditions can complicate the management of epilepsy and overall well-being. Healthcare professionals should routinely inquire about the mental health of pediatric epilepsy patients and provide or refer them for appropriate support, such as counseling or psychiatric care.

ASM Considerations to Facilitate Adherence Into Adulthood

Medication adherence is crucial for managing chronic conditions and promoting positive health outcomes. Since adolescents and young adults face unique challenges and opportunities during this period, equipping them with knowledge, guidance, and resources is key.

Potential consequences of non-adherence include unfavorable disease outcomes as demonstrated across many pediatric conditions like asthma and hospital admissions, type I diabetes and diabetic ketoacidosis, cancer and relapse rates, and solid organ transplant and graft failure. ¹³ Medication non-adherence can lead to inappropriate changes in treatment regimens or dosage adjustments with subsequent toxicity if a patient resumes the medication as prescribed. Increased time spent investigating a lack of treatment response and increased healthcare costs are also potential consequences.

Assisting patients and families with solutions to overcome barriers to medication adherence is vital. To address cultural or language barriers, healthcare personnel should provide culturally sensitive and inclusive care, utilize medical interpreters, and translate education and instructions. Simplified medication dose scheduling, with reduced pill burden and number of doses given per day, and how the medications can fit into the patient's life will ensure more complete adherence. To overcome gaps in understanding, it is important to spend time counseling patients and their support system and utilize the teach-back method to assess understanding. An often rate-limiting factor regarding socioeconomic status and access to medications is affordability. Several potential solutions include prescribing generics, utilizing manufacturer rebate programs, prescription assistance programs (eg, Good Rx), alternate pharmacy options (eg, Cost Plus Drugs), and disease-specific organization funding (Epilepsy Foundation). Advocacy for equitable access and policy recommendations to lawmakers should be a high priority for healthcare professionals. ¹⁴

Specific challenges to consider for antiseizure medications when transitioning to adulthood include switching drugs and doses. Antiseizure medications often have side effects and drug interactions. Patients need to understand what to watch for and the required lab monitoring schedule. Counseling on the safe use of alcohol, avoidance of substances of abuse, and responsible sexual health are needed due to antiseizure medications increasing the risk around these important topics.

Certain technology tools can help patients move toward ownership of all aspects of their medications, including medication apps (eg, Medminder, Medisafe, etc), scheduled phone alarms, and pharmacy-specific apps. It is imperative to practice navigating medication issues including refill requests, insurance issues, and advocating on their behalf for more affordable options. How medications will be obtained for the transitioning patient must be planned, whether they continue to use the same pharmacy or seek a pharmacy closer to their new residence.

While no specific intervention has proven effective in improving adherence in all situations, a combination is likely the most successful. Patients need consistent, active involvement with their medication plan to take ownership, and a patient-specific approach, considering potential barriers, is recommended.

Decision-Making Ethics: Guardianship and Alternatives

Prior to 18, the family and caregivers have significant input on the epilepsy care, but once adulthood is reached, the dynamics of decision-making change from a legal perspective as decision-making shifts to the patient. Considering the impact of these decision-making plans on the young adult with epilepsy, the family and the epilepsy care team is key.

Certain ethical principles can inform how to best support decision-making in youth and young adults with epilepsy. ¹⁵ Respecting the individual's right to make their own choices facilitates patient autonomy. This must be balanced by supporting the tenets of beneficence and non-maleficence to avoid harm to the young adult. Medical care requires the young adult, family/caregivers, and physicians to respect the patient through the informed consent process by identifying the risks and benefits of any treatment or procedure. As a result, it is important to provide young adults and families with the resources and support to establish a decision-making plan prior to age 18.

Several models of decision-making have been proposed nationally and internationally to guide the medical provider. For example, the AAP recommends a shared decision-making model that involves closer coordination with the physician and family/caregivers. ¹⁶ In the United States, the Seek, Help, Assess, Reach, Evaluate, or SHARE approach has been recommended for adults. A step-by-step process is outlined to facilitate this shared process. ¹⁷ This model recommends actively involving the patient in the exploration and comparison of treatment options and collaborative decisions between the patient and the medical provider regarding the next steps in the patient's care. Similarly, in the United Kingdom, the Benefits, Risks, Alternative, Nothing or B.R.A.N. process has been recommended for all patient interactions to improve the understanding of the complex medical treatment and procedures that many patients and loved ones are faced with regarding their healthcare. ¹⁸

The process of shared decision-making models will likely need modification if the young adult with epilepsy has cognitive or mental health comorbidities. Fortunately, some models can guide this process. ¹⁹ In many states, there is a formal legally recognized process called Supported Decision-making, ²⁰ which allows adults to identify individuals in their lives who can be authorized as “supporters.” These “supporters” can be granted access to the patient's health record and have legal standing to interpret, support, and communicate the patient's values and goals to the medical providers. The ultimate decision-making remains with the young adult.

When a young adult's capacity or functional ability to independently make healthcare decisions is compromised, additional legal decision-making processes will need to be pursued. These include the activation of a healthcare power of attorney or seeking to implement a guardianship/conservatorship. While these processes will impact the autonomy of the young adult with epilepsy, they are essential when the patient is unable to understand the severity or risks associated with their medical care. The young adult with epilepsy should always be involved in the medical care discussion as much as possible to have a voice in their care.

In order to facilitate optimal healthcare outcomes, the patient, their family/caregivers, and the epilepsy healthcare team will need to identify the best decision-making care model to support the young adult with epilepsy as they begin their journey into adulthood.

Designing and Implementing the Multidisciplinary Transition Clinic

Transition involves services provided by pediatric and adult epileptologists, mental health professionals, social workers, and support for educational and legal challenges (Figure 1). The goals of a transition clinic include assessing youth with epilepsy for readiness to transition, educating them to enhance their understanding of a chronic illness, and fostering their ability to take maximum responsibility for its management. Ultimately, a transition clinic facilitates the transfer of care to a suitable adult provider and ancillary support services.

Figure 1.

Multidimensional aspects of transition.

Various models of transition clinics have been developed across the world. ²¹ These models vary in their structure, including location (adult vs pediatric hospitals), personnel, number of visits, and more. Staffing approaches differ, often involving adult and pediatric neurologists, with or without a neurology nurse (Table 1).

Table 1.

Transition Clinic Models.

	Canada—joint ped adult	Canada—adult neuro in ped hospital	Canada nurse specialist	France—specialty referral center	Colombia—proposed checklist	Germany	UK—joint ped adult
Staffing	PN, AN, ANC	AN, PNC	Ped and adult Nurse	AN	PN	PN + patient education modules	PN, AN, ANC
Setting (hospital)	Adult	Pediatric	Adult	Adult	Pediatric	Pediatric + home	Adult
# of visits	2-3	1	2-3	Ongoing	Years		2-4
Challenges	Manpower	Single AN		Single AN	Variability in PN involvement	Generalizability?	Funding
	Canada—joint ped adult	Canada—adult neuro in ped hospital	Canada nurse specialist	France—specialty referral center	Colombia—proposed checklist	Germany	UK—joint ped adult
Staffing	PN, AN, ANC	AN, PNC	Ped and adult nurse	AN	PN	PN + patient education modules	PN, AN, ANC
Setting (hospital)	Adult	Pediatric	Adult	Adult	Pediatric	Pediatric + home	Adult
# of visits	2-3	1	2-3	Ongoing	Years		2-4
Challenges	When two key physicians retired, the structure of this clinic did not persist.	Referring physician might not be knowledgeable about epilepsy or new treatments.		Single AN may be overwhelmed	Variability in PN involvement	Generalizability? Unclear if applicable to small center	Ongoing funding

Abbreviation: PN, pediatric neurologist; AN, adult neurologist; ANC, adult nurse coordinator; PNC, pediatric nurse coordinator.

Adapted from Carrizosa J, et al Epilepsia. 2014 Aug;55 Suppl 3:46-51.

Developing and sustaining transition clinics has been challenging across medical systems, as these clinics are resource-intensive and often face poor reimbursement. Additionally, adult and pediatric systems of care are not always aligned, further compounding their sustainability. For example, a transition clinic in Nova Scotia that used this model was effective but was not sustainable following the retirement of two key providers. In the United States, one model piloted at a pediatric tertiary care hospital involved an adult epilepsy fellow as the adult epilepsy provider and acting as a liaison between clinics to ensure continuity of care after transfer. The clinic could not be sustained due to a lack of referrals. ²²

Beyond the sustainability challenge, the success of these transition clinics has also been variable. In the United States, one model introduced a multidisciplinary transition clinic with an embedded adult provider ²³ : 91% of patients followed in this clinic (n = 33) successfully transferred to adult neurology compared to 65% of patients not seen in the clinic (P = .37). Additionally, only 9.1% of patients from the clinic were lost to follow-up compared to 35% of those not followed in the clinic (P = .13). These encouraging results need to be reproduced.

Advances in diagnostics and therapeutics have improved long-term survival in several pediatric diseases across subspecialties, making transition of care a broad necessity. Many transition needs are not disease-specific, signaling potential value for broadly applicable transition programs. These programs can consolidate resources, such as social, educational, and legal support, and are especially useful in resource-limited areas, and in managing rare diseases. One such program, the Center for Healthy Adolescent Transition (CHAT), developed at the Children's Hospital Los Angeles, provides transition case management, patient navigation, insurance, and legal support, and connects pediatric patients with adult providers. ²⁴

Assessing transition readiness should be considered even in the absence of a formal transition program or clinic. Several tools help assess transition readiness. The Transition Readiness Assessment Questionnaire (TRAQ) is an easy-to-use, validated instrument that screens for transition readiness across 5 domains: managing medications, appointment keeping, tracking health issues, talking with providers, and the importance and confidence around healthcare self-management. ²⁵ While TRAQ provides a helpful overview of transition readiness, it is not specific to epilepsy. Clark et al developed a disease-specific transition screening tool, incorporating epilepsy-related questions based on input from the 2014 and 2017 AAN Quality Measures.^26,27 This tool, known as EpiTRAQ, is validated for adolescents and young adults aged 16-26 years. It includes key epilepsy-specific questions related to seizure type, seizure frequency, anti-seizure medications, and counseling for women of childbearing potential with epilepsy. ²⁸ Additional readiness assessment tools include Am I ON TRAC for Adult Care, the Self-Management and Transition for Adulthood with Treatment (STARx), and Transition Q.^28–32

Conclusion

The transition to adulthood for people with epilepsy (PwE) is a nuanced and multifaceted process that requires careful attention. Healthcare professionals can enhance clinical practices by understanding the differences between pediatric and adult care models, assessing institutional processes for transition and transfer of care, and leveraging available resources. Transparent and informed communication between providers, patients, and families is essential to address healthcare needs, self-management skills, decision-making abilities, mental health, independent living, and support resources. Early and consistent discussions around transition-related topics help identify barriers, paving the way for a smoother transition.

While evidence supports the benefits of transition clinics, many institutions may lack the resources to establish them. However, implementing strategies and tools for medication adherence, self-management, and patient-centered care within existing systems can drive meaningful improvements. Multidisciplinary teams are invaluable in providing holistic support. Continued evaluation of tools, resources, and strategies remains necessary as healthcare systems and technologies evolve. By prioritizing transition care and adapting best practices, healthcare providers can empower PwE to navigate adulthood with independence and confidence.