Perception of the Transition from Pediatric to Adult Care in Patients with Epilepsy and Their Comorbidities: Experience Report from a Brazilian University Center

Epilepsy is a chronic and stigmatizing disease, belonging to a heterogeneous group of neurological conditions, characterized by a persistent predisposition to epileptic seizures. It is estimated that 50% of epilepsy cases begin in childhood and adolescence, profoundly affecting both children and adults. This condition, in addition to directly impacting neurological health, is surrounded by myths and beliefs that hinder patients’ normal lives, exacerbating the associated stigma.

In the pediatric population, any disease can represent a significant risk to physical, psychological, and cognitive development. However, epilepsy, due to its neurological impact, seems to affect children more deeply than other chronic diseases, with psychosocial consequences that may limit quality of life more than the epileptic seizures themselves.

The transition from pediatric to adult care

The transition of care, defined as the planned process of transferring patients with childhood-onset epilepsy to adult care, is a critical milestone in disease management [1]. This process involves transferring the follow-up from a pediatric neurologist to an adult neurologist. A failed transition can result in loss of followup, poor treatment adherence, and adverse outcomes, including disease relapse and, in extreme cases, death. Each patient requires an individualized approach during this transition, from childhood to adult care [2].

This study aims to identify and understand the challenges faced by patients with epilepsy during the transition from pediatric to adult care, assessing their comorbidities, autonomy, and collecting their views and opinions on the subject, as well as those of their caregivers.

Between 2019 and 2023, structured and validated questionnaires were administered to 31 adolescents aged 12 to 18 years diagnosed with epilepsy at the ABC Faculty of Medicine University Center, in Santo André, São Paulo, Brazil. The questionnaire contained 55 questions and was administered to both patients and their caregivers. In addition to clinical follow-up, a psychosocial intervention was conducted, focusing on education about the disease and its treatment, promotion of autonomy and self-care, and analysis of the environmental, social, economic, and developmental influences that impact the quality of life of patients and their caregivers.

Of the 31 patients who responded to the questionnaire, all met the inclusion and exclusion criteria. A significant clinical heterogeneity was observed, with 63% of patients and caregivers not understanding the type of epilepsy. The most common comorbidities were anxiety (46%), ADHD (33%), depression (6%), and OCD (3%). Regarding adolescents’ understanding of their health condition, 53% reported not fully understanding their condition. Additionally, 45% of adolescents do not actively participate in their health care, and 87% do not have a career plan and cannot assess the impact of the disease on their future (Table 1) (Figure 1) (Table 2).

Table 1:Prevalence of epilepsy according to age group and number of subjects in each group.

Table 2:Incidence of comorbidities in the pediatric population undergoing epilepsy transition.

Figure 1:Prevalent of epilepsy according to age group and number of subject in each group..

The results of this study underscore the complexity of the transition process from pediatric to adult care in patients with epilepsy, particularly when considering the high prevalence of associated comorbidities [3]. Epilepsy, in addition to being a chronic neurological condition, is often accompanied by psychiatric and behavioral disorders that further complicate disease management, especially during the critical period of adolescence.

The most common comorbidities identified in this study, such as anxiety (46%), ADHD (33%), depression (6%), and OCD (3%), reveal a significant psychosocial burden among adolescents with epilepsy. These conditions not only directly affect patients’ quality of life but also interfere with treatment adherence, self-care, and the ability to transition to independent and functional adult life (Figure 2).

Figure 2:Incidence of comorbidities in the pediatric population undergoing epilepsy transition.

Anxiety, which was the most prevalent comorbidity, can be both a consequence of epileptic seizures and a factor that exacerbates them [4]. Constant worry about the occurrence of seizures, social stigma, and lack of understanding about the disease contribute to high levels of stress and anxiety in patients. These factors can lead to a vicious cycle, where increased anxiety worsens seizure control and, in turn, seizures increase anxiety, creating a clinically challenging scenario.

ADHD, present in 33% of patients, adds an additional layer of challenge, particularly regarding treatment adherence and the ability to follow care plans [5]. Adolescents with ADHD may struggle with medication adherence, active participation in consultations, and understanding the implications of their health condition. Moreover, ADHD can contribute to academic and social difficulties, potentially exacerbating the negative impact of epilepsy on the patient’s life.

Depression, although less prevalent (6%) in our study, must be carefully monitored as it can have devastating consequences if left untreated. Depression in adolescents with epilepsy may be underdiagnosed due to the overlap of symptoms with epilepsy and its medications. The presence of depression can lead to a lack of motivation for self-care, increased suicidal ideation, and, in extreme cases, may worsen the prognosis of epilepsy [6].

OCD, identified in 3% of patients, is another comorbidity that can complicate epilepsy management. Obsessive-compulsive disorders can lead to repetitive behaviors and rituals that interfere with the treatment routine and may create additional obstacles to a successful transition to adult care.

One of the most concerning findings was that 53% of adolescents do not adequately understand their health condition, and 45% do not actively participate in their health care. This low level of engagement is worrisome because the transition to adult care requires the patient to take greater responsibility for managing their condition. Lack of understanding and participation can result in poor treatment adherence, discontinuity of care, and worsening health outcomes.

Furthermore, the absence of a career plan in 87% of patients reflects the significant impact that epilepsy and its comorbidities have on adolescents’ future perspectives. Uncertainty about the disease’s impact on adult life, combined with the limitations imposed by comorbidities, can lead to feelings of helplessness and lack of direction, which need to be addressed during the transition process.

These results highlight the need for a multidisciplinary and personalized approach to care transition. The simple transfer of responsibility from a pediatric neurologist to an adult neurologist is not enough; continuous support is required, including education, psychological guidance, and interventions that promote autonomy and self-care. Health teams should work closely with patients and their families to ensure that all aspects of mental and physical health are addressed, minimizing the risk of negative outcomes during and after the transition [7,8].

In summary, the high prevalence of psychiatric and behavioral comorbidities in adolescents with epilepsy highlights the importance of careful planning and an integrated approach to care transition. By focusing on the early identification and management of these comorbidities, we can significantly improve health outcomes and facilitate a smoother transition to adult care, contributing to better long-term quality of life for these patients [8].

The transition from pediatric to adult care in patients with epilepsy is a complex and multifaceted process that involves much more than the simple transfer of medical care. When well-planned and executed, this process can significantly determine the success of epilepsy management in adult life, affecting not only seizure control but also the quality of life and autonomy of patients.

Our study reveals that although epilepsy is a chronic neurological condition common in childhood, its psychosocial comorbidities and impact on patients’ cognitive, physical, and emotional development are often underestimated during the transition. The high prevalence of comorbidities such as anxiety, ADHD, depression, and obsessivecompulsive disorder among adolescents with epilepsy highlights the need for a more holistic and integrated approach that goes beyond seizure control.

Furthermore, data show that a significant number of adolescents do not fully understand their health condition or actively participate in medical care. This not only limits their ability for self-care and disease management but also affects their future career and personal life prospects. The lack of career planning among these adolescents indicates that epilepsy and its comorbidities can have a lasting and limiting impact on their lives, compromising their ability to achieve full autonomy and social integration.

Therefore, the transition from pediatric to adult care should be seen as a critical opportunity to intervene early and effectively, ensuring that adolescents with epilepsy and their families are well informed, prepared, and supported throughout the process. This includes not only education about the condition and treatment but also the development of self-care skills, promotion of autonomy, and psychological support to cope with comorbidities and the stigma associated with epilepsy.

The success of the transition also depends on collaboration between healthcare professionals, patients, and their families. It is essential that pediatric and adult neurologists, psychologists, social workers, and other professionals involved in the care of these patients work together to create a personalized transition plan that takes into account the individual needs of each patient. The integration of psychosocial and educational support services can help mitigate the adverse effects of comorbidities and improve long-term outcomes.

Finally, the findings of this study suggest the need for more comprehensive policies and guidelines for the transition of care in patients with epilepsy. These guidelines should include clear recommendations on the timing and strategies for transition, as well as the integration of psychosocial care into the treatment plan. By investing in the effective transition of these patients, we can improve not only epilepsy control but also the overall development and quality of life of adolescents as they become adults.

This focus, which prioritizes the patient’s overall well-being, can be crucial in reducing health disparities, promoting autonomy, and ensuring that adolescents with epilepsy reach their full potential as adults. It is our responsibility as healthcare professionals to ensure that this transition is conducted in a way that provides the best possible outcomes, both medical and psychosocial, for this vulnerable population.

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