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Burden of DEEs

DEEs place a significant burden on patients and their families. Below are a handful of ways in which people are affected by these disorders.

Statistics

Worldwide, roughly 50 million people are affected by epilepsy, and it incurs more than 13 million disability-adjusted life years annually. Epilepsy is a bimodally distributed disease, affecting both older and younger patients disproportionally.1 In the United States, nearly 3 million adults and nearly 500,000 children are estimated to have an active diagnosis of epilepsy, amounting to approximately 1.2% (95% CI: 1.1 to 1.4) of the US population.2

Quality of Life

Epilepsy in childhood, as well as in adults with later-diagnosed DEEs, is associated with substantial reductions in health-related quality of life as measured by multiple survey tools. Physical functioning, behavior, social functioning, mental health, cognition, and overall quality of life are all adversely affected by epilepsy.3 Identifying specific classifications of epilepsy syndromes and evaluating patient-reported outcomes, including the effect of epilepsy on seizure frequency, sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, family life, and global quality of life, is crucial to characterizing and treating patients effictively.3,4

Care Transitions

Given the substantial heterogeneity of epilepsy syndromes exhibiting DEEs, management is complex and requires consideration of the patient’s full history of therapy that may not be available following transitions from pediatric to adult care (see figure below). Treatment may be complicated by a misunderstanding of epilepsies labeled as “childhood epilepsies” as syndromes that primarily affect children, without recognizing the continued limitations of such epilepsies into adulthood. Challenges in care transitions for patients with epilepsy require consideration of social, medical, age-related, and disease-related factors—all of which may affect quality of life.5 Additionally, transitions of care are better understood as a process, rather than an event, requiring multiple steps that ideally include a nurse or a social worker to coordinate complexities.

Adapted from: Brown LW. Pract Neurol, 2020.6

Comorbidities

Epilepsy is associated with multiple comorbidities, including depression (23%) and anxiety (20%). In children, the most common comorbidity is intellectual disability as well as neurodegenerative disease. Children and youth with epilepsy are 3-6 times more likely to have neurodevelopmental or psychological comorbidities compared to the general pediatric population or youth with other conditions.5 Additionally, due to a lack of adequate diagnostic work-up, many cases of epilepsy in adults are undiagnosed DEEs, with 12% to 50% of adult patients with epilepsy across case series benefiting from additional diagnostic workup.4,6

References

  1. World Health Organization. Epilepsy: a public health imperative. June 13, 2019. https://www.who.int/publications/i/item/epilepsy-a-public-health-imperative
  2. Zack MM, Kobau R. National and state estimates of the numbers of adults and children with active epilepsy – United States, 2015. MMWR Morb Mortal Wkly Rep. 2017;66:821-825. doi:10.15585/mmwr.mm6631a1
  3. Crudgington H, Collingwood A, Bray L, et al. Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy. Epilepsy Behav. 2020;112:107372. doi:10.1016/j.yebeh.2020.107372
  4. Aledo-Serrano Á, Mingorance A, Villanueva V, et al. The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study. Front Neurol. 2022;13:975034. doi:10.3389/fneur.2022.975034
  5. Balestrini S, Guerrini R, Sisodiya SM. Rare and complex epilepsies from childhood to adulthood: requirements for separate management or scope for a lifespan holistic approach? Curr Neurol Neurosci Rep. 2021;21:65. doi:10.1007/s11910-021-01154-7
  6. Brown LW. Medical transition from pediatric to adult care in neurology. Pract Neurol. Published March/April 2020. https://practicalneurology.com/articles/2020-mar-apr/medical-transition-from-pediatric-to-adult-care-in-neurology

All URLs accessed August 17, 2024

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