Philip M. Gattone, M.Ed.
President and Chief Executive Officer, Epilepsy Foundation

In their commentary entitled, “Epilepsy and Comorbidities: What are we waiting for?” Asato et al accurately and eloquently describe a pervasive problem manifesting itself in clinical settings across the United States [1].

As clearly stated in the article, psychiatric co-morbidities such as depression, anxiety and schizophrenia are critical issues facing many individuals fighting epilepsy. These comorbid conditions, for some, may dominate other challenges of seizures as well as risks of sudden unexplained death in epilepsy and other seizure-induced mortality. Despite heroic efforts made by epilepsy specialists and their teams, mental health comorbidities remain at best largely unsatisfactorily addressed in the clinic.

While much needs to be done, the good news is that incredible efforts take place in community settings across the country each and every day by professionals who treat concurrent conditions facing individuals fighting recurring seizures. These are professionals who share the frustration of the authors. The message to our medical professional partners in the clinic is “you don’t have to go down this road alone.” Evidenced-based initiatives addressing mental health comorbidities have been developed, tested and are now being implemented by the epilepsy team at the Centers for Disease Control and Prevention (CDC) and their institutional partners in the Managing Epilepsy Well (MEW) Network, of which the Epilepsy Foundation is proud to be a partner. Partnerships developed by Epilepsy Foundation and its affiliate partners directly support individuals and families facing epilepsy and the complexities of comorbid conditions by connecting them with services in the home or in the community that directly address these concurrent conditions.

Despite the challenges we face with comorbidities and epilepsy in the clinic, if community partners and clinicians work together we may find a way to more effectively reduce the burden of epilepsy on individuals and families. Finding solutions for individuals facing epilepsy and improving quality of life is part of the mission of the Epilepsy Foundation. We help individuals living with epilepsy to overcome challenges created by this insidious and complex condition—needs involving housing, employment, practical therapies that can make a difference in a timeframe that matters, as well as access to all the clinical and supportive care needed to maximize quality of life.

The Epilepsy Foundation and CDC have long been partners leading an effort to better understand the impact of comorbid conditions on individuals living with epilepsy. We have together developed and implemented successful programs for individuals to manage their lives. Our partnership is highlighted in the recommendations listed in the 2012 Institute of Medicine Report, Epilepsy across the Spectrum. The Epilepsy Foundation and CDC were included as partners to improve the delivery of healthcare services, community supports, education and public awareness of epilepsy to improve the quality of life of the almost 3 million children and adults who have epilepsy.

Recent changes in the law now allow licensed practitioners to deliver care in non-clinical settings, offering new possibilities for our partnership to reduce the burden associated with epilepsy and may significantly reduce the burden comorbid conditions place on professionals in the clinic. Two examples of how our partnership may assist professionals in the clinic include the PEARLS program and Project Uplift, both collaborations between the Epilepsy Foundation, the CDC and the MEW network.

The PEARLS program (Program to Encourage Active Rewarding Lives) for Epilepsy is a collaborative care program designed to treat major depression, minor depression, and dysthymic disorder in adults with epilepsy. Delivered by a trained counselor in the client's home over a 19-week period, PEARLS consists of 8, 50-minute sessions of problem solving treatment, behavioral activation, and psychiatric consultation, followed by 3 to 4 follow-up phone calls. In a randomized controlled trial study, patients assigned to the PEARLS intervention achieved lower depression severity scores and lower suicidal ideation over 12 months than patients who received usual care [2]. These findings extended to 18 months [3].

Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) program is an 8-week program delivered through the Internet or by telephone to groups of adults who have both epilepsy and depression [4]. Participants are taught how to identify and modify their thoughts and to become aware of and nonreactive to negative thoughts. Participants practice relaxation exercises and skills, including monitoring their thoughts, identifying problems and supports available to address them, and setting goals.

Intervention groups are co-facilitated by a trained peer with epilepsy and a graduate student, both under the supervision of a licensed, clinical psychologist.

With funding from the National Institutes of Health, Project UPLIFT was modified into a depression prevention intervention. Providers in 16 states have been trained to deliver UPLIFT. UPLIFT is currently available in Texas, through the Parkland Healthcare System, and in Florida and Michigan through the Epilepsy Foundation. It is available in Minnesota, through MINCEP.

These and other initiatives that address comorbidities are available now to medical professionals, but professionals may not be widely aware of these important initiatives. As we launch our new www.epilepsy.com/professionals website, we will be able to better provide opportunities for professionals to become aware and partner with us in these and other innovative initiatives.

Fragmentation of care is, in part, a function of our broken healthcare system. Our fragmentation as an epilepsy community has cost people living with epilepsy dearly. It affects our ability as a community to make an impact in increasing research funding as well as improving access to care. The merger of the Epilepsy Foundation with the Epilepsy Therapy Project was born out of a desire to overcome the barriers that fragmentation creates and now more than a year into our newly formed organization, we are experiencing the benefits of aligning our missions to more effectively serve our community.

The Epilepsy Foundation stands with the authors and with the clinical professionals and our community partners who courageously and selflessly go the extra mile every day for individuals living with epilepsy. Together we will navigate our way to a more coordinated care system that will achieve our mutual goal of improving lives in a timeframe that matters.

I support the authors’ assessment and encourage the epilepsy clinical community to look to the Epilepsy Foundation and its affiliate partners as teammates in new therapy development and care and coordination of services for individuals living with epilepsy and their families.

References

  1. Asato MR, Caplan R, Hermann BP. Epilepsy and comorbidities—what are we waiting for? Epilepsy Behav 2014;31:127–8.
  2. Ciechanowski P, Chaytor N, Miller J, Fraser R, Russo J, Unutzer J. PEARLS depression treatment for individuals with epilepsy: A randomized controlled trial. Epilepsy Behav 2010;19:225-31.
  3. Chaytor N, Ciechanowski P, Miller JW, Fraser R, Russo J, Unutzer J, et al. Long-term outcomes from the PEARLS randomized trial for the treatment of depression in patients with epilepsy. Epilepsy Behav 2011;20:545-9. Thompson NJ, Walker ER, Obolensky N, Winning A, Barmon C, et al. Distance delivery of mindfulness-based cognitive therapy for depression: Project UPLIFT. Epilepsy Behav 2010;19:247-54.

In Epilepsy & Behavior; May 2014; 34: 144-145.

Reprinted with permission from Epilepsy & Behavior, Elsevier for Editorials.