For people with epilepsy (PWE), suboptimal management of psychological complications and inadequate monitoring of symptoms and seizures are key challenges that can negatively impact treatment outcomes and quality of life.
Today, however, a renewed focus on quality of life and a growing awareness of digital technologies to support PWE are leading trends that are set to transform epilepsy care. Here, digital therapeutic (DTx) solutions have the potential to catalyze this transformation and optimize patient outcomes.
Epileptic Seizures–A Complex Diagnosis
Epilepsy is a complex condition that can result from almost any insult to the brain, including infection, autoimmune conditions, traumatic injury, and genetic mutations. While the cause of epilepsy is unknown in many patients, diagnosing the seizure type–which varies depending on the affected area of the brain–is key to guiding clinical management.
However, diagnosing epileptic seizures is challenging. Conventional diagnostic approaches–primarily taking a medical history, EEG, and neuroimaging– may not accurately categorize the type of epileptic seizure or may fail to distinguish between epileptic seizures and seizure mimics. Additionally, patients often struggle with accurate recall of their seizure experience, particularly young children, individuals with intellectual disability, or those affected by epileptic amnesia.
Tackling Seizures–A Key Challenge in Epilepsy Care
Epileptic seizures can have serious and enduring consequences for patients, including cognitive dysfunction, mental illness, and social isolation. Freedom from seizures is therefore a primary goal of epilepsy care. Anti-seizure drugs (ASDs) are the backbone of epilepsy care and emerging research is paving the way towards personalized medicine in the diagnosis and treatment. However, at present, only a select group of patients may benefit from these targeted treatments.
ASDs are used to suppress seizure generation, decrease seizure severity, and reduce patient mortality. While ASDs are moderately effective, all have acute dose-related effects and some have long-term adverse effects. Additionally, ASD treatment continues to be largely empirical, with many patients switching medications to achieve seizure control or improve tolerability.
Furthermore, one-third of patients treated with ASDs continue to have uncontrolled seizures, increasing their risk of psychological and social dysfunction, hospitalization, and premature death. Many of these patients have drug resistant epilepsy (DRE) and could benefit from specialist-level therapies, such as surgery and neurostimulation. However, referral to epilepsy specialist care remains suboptimal, in part due to inadequate monitoring of seizure frequency and medication adherence that enables the detection of DRE.
The Bigger Picture: Quality of Life and Mental Health
Seizure freedom is a primary treatment goal for patients with epilepsy. However, for many, having a good quality of life is even more important, yet this is difficult to achieve. Depression and anxiety are common comorbidities of epilepsy, affecting 20% of PWE and up to 50% of those with DRE. In fact, despite a clinical focus on seizure control, depression has a much stronger impact on quality of life than does seizure frequency, and even mild depressive symptoms lower the quality of life in PWE.
Depression and anxiety also directly affect brain chemistry and neuronal activity, acting as drivers of epileptic seizures. Stressful events have been associated with increased EEG-detected epileptiform activity and MRI-detected cerebrovascular reactivity.
Additionally, depression, stress, and anxiety indirectly promote seizures by contributing to sleep deprivation, fatigue, and poor medication adherence, which are well-known seizure precipitants. In PWE, depression, and other psychiatric disorders are associated with a 13-fold increased risk of premature death, primarily from suicide, accidents, and drug overdoses.
Boosting Holistic Approaches to Epilepsy Care
Given the significant burden of psychological, cognitive, social, and physical challenges for PWE, quality of life, and mental health management are increasingly recognized as key components of epilepsy care. Epilepsy experts now advocate for holistic care approaches that address the physiological, psychological, cognitive, and social dimensions of care.
In 2017, the American Academy of Neurology updated recommendations for epilepsy quality measures to include screening for depression and anxiety, as well as quality of life assessments and outcomes. More generally, patient-reported outcomes, including those measuring quality of life, are becoming increasingly integrated into value-based payment models in the United States and elsewhere.
Interventions That Support Quality of Life
A number of therapeutic approaches have been shown to substantially improve quality of life for PWE. Psychotherapeutic and pharmacological interventions may lower the occurrence of mood-related adverse outcomes, such as diminished quality of life, social isolation, and suicide.
Additionally, patient self-management of seizure precipitants may substantially improve treatment outcomes, as over 90% of PWE are able to identify one or more seizure precipitants, including stress, sleep deprivation, fatigue, poor medication adherence, and depressive symptoms.
Research has shown that cognitive behavioral therapy (CBT) and lifestyle interventions that address seizure triggers and improve patient self-management can significantly reduce seizure frequency and intensity.
Several randomized clinical trials reported that CBT and mind-body interventions for epilepsy–including some delivered remotely– also significantly reduced the incidence of major depressive episodes, and lowered the frequency and severity of seizures over a 12-month follow-up period.
Collectively, these trials suggest that remotely delivered self-management interventions for epilepsy can have sustained efficacy in lowering the risk of depression and seizures in diverse populations. Other studies have shown that interventions based on epilepsy education and supervised exercise significantly reduce depressive symptoms among PWE, and thus may also reduce seizure activity.
Gaps in Holistic Care for People With Epilepsy
Despite the accumulation of evidence supporting holistic care for PWE, this approach remains underused in clinical practice. A 2019 survey evaluating epilepsy care reported that care teams often do not discuss the emotional and social toll of seizures with their patients. This same survey found that patients often did not raise these issues themselves, feeling that their clinicians were primarily concerned with clinical outcomes, such as seizure frequency.
Indeed, depression, anxiety and related conditions, such as sleep disturbance, remain underrecognized and undertreated in PWE, despite the availability of valid and reliable screening tools.
Even when appropriately referred to mental health services, PWE don’t often seek care, highlighting a need for education and support to overcome key barriers, including stigma, low access, and mistrust of medical institutions.
Care gaps are also evident in other aspects of holistic epilepsy care. A recent US survey reported that half of clinicians do not adequately conduct patient education and counselling regarding key issues in epilepsy care, including a new epilepsy diagnosis, seizure types, and safety and injury prevention. These findings underscore the difficulty of providing holistic, patient-centered care in busy clinical practices and support the need for innovative solutions to strengthen clinician-patient communication and empower patients.
Information Gaps in Epilepsy Care
Epilepsy is a chronic but unpredictable condition, and clinicians need continuously updated patient data to provide high-quality holistic care for PWE. However, clinicians typically lack access to this information in real time, potentially compromising their ability to assess key parameters, including the influence of seizure precipitants on patient outcomes and subtle changes in patients’ health.
Even early in the patient journey, diagnostic uncertainty (due to a lack of definitive clinical testing) and a trial-and-error approach to choosing an ASD may lead to patient frustration with their care plan and/or distrust of their care team.
Additionally, PWE require long-term follow-up, but may only attend in-person clinic visits a few times a year. Infrequent evaluation of patient outcomes and treatment-related adverse events may delay clinical decisions regarding referrals to mental health services or changes in medication. Moreover, an incomplete understanding of the patient’s medication adherence patterns can lead to missed opportunities for education, or, conversely, delayed recognition of DRE.
Current Digital Monitoring Tools For Epilepsy–A Good Start But Not Enough
Time and personnel constraints in epilepsy practices are important contributors to infrequent or delayed monitoring of PWE. To address this gap, active and passive remote monitoring tools are increasingly being used to capture data on patient outcomes, symptoms, and seizures.
In turn, these data are changing the patient care journey by contributing to shared decision-making between patients and practitioners, as well as decision-support for goal-based behavioral change.
Nevertheless, as with medications, digital monitoring tools are usually user-dependent and require patient adherence. Most of the currently available mobile diaries do not incorporate features that can dramatically boost patient engagement, such as an individualized interface, and other supportive apps for self-management, wellness, and clinician-patient communication.
Moreover, current digital tools for epilepsy management may not be poised to leverage cutting-edge technologies, including real-time movement detection of epileptic seizures, which is an active area of therapeutic development.
DTx Solutions For Better Outcomes in People With Epilepsy
Epilepsy experts have come to increasingly recognize the role of digital technologies in supporting PWE throughout the care journey. In a recent review on epilepsy management, authors noted that integrated digital tools, “would arm patients with epilepsy with an individually optimized suite of educational and disease management tools to adjunctively support a traditional pharmaceutical or device-based treatment plan.”
By combining patient education, evidence-based interventions, AI-driven personalization, and advanced remote monitoring, DTx solutions such as Sidekick Health’s can provide an integrated self-management platform with the potential to truly transform epilepsy care. The Sidekick platform can also leverage gamification to optimize patient adherence to evidence-based therapies, as well as mitigate the effects of comorbidities and seizure triggers (such as anxiety and depression) through CBT and mind-body practices.
Using advanced technologies that detect and analyze voice, video, and motion data, digital therapeutics also have the potential to remotely track seizures and digital biomarkers of epilepsy in real time. Other key features of an epilepsy DTx may include medication reminders, medication and seizure diaries, on-demand teleconsultations, and streamlined access to financial assistance for therapy.
Through these innovative modalities, DTx can help PWE foster positive social connections and healthy clinician-patient relationships, as well as adopt effective self-management tools. Taken together, these approaches are key to promoting well-being in epilepsy.