Collaborating to Improve Pediatric Epilepsy Surgery
Intractable epilepsy (failure to achieve seizure freedom after trials of two appropriate chosen and dosed antiepileptic drugs) has profound impact on quality of life, psychosocial function, cognitive function, and mortality risk1. For these patients, surgical therapy, consisting of localization and subsequent resection/ablation of the epileptogenic zone can result in favorable seizure reduction and for many, seizure freedom. Among patients with intractable epilepsy, an estimated 5-50% may be candidates for epilepsy surgery 2. The decision to offer epilepsy surgery as a therapeutic option is a complex process requiring accurate localization of the epileptogenic zone with the benefits of surgical therapy outweighing the potential surgical morbidity and injury to eloquent cortex.
The criteria used to select patients for epilepsy surgery vary by center. Often criteria are influenced by sources of patient referral, the experience of the epilepsy team, the resources available to investigate candidates, and the availability of alternative treatment options. A “good candidate” for epilepsy surgery is most often defined as a patient likely to have a good outcome for seizure control with little to no functional deficit as a result of treatment provided at the center performing the procedure. Thus, a patient considered a poor candidate at one facility might be considered a good candidate at another based solely on the team's experience. While expert consensus recommendations detailing the options for presurgical evaluation have been attempted and international surveys characterizing the evaluation in Europe have been completed, there are not well-vetted guidelines for how best to carry out evaluations, how it is done in the US, or how the evaluation/treatment impact ultimate outcome. Studies that describe the relative value of the many components of an evaluation (i.e. MRI, SPECT, PET, etc.) or modes of treatment (i.e lobectomy, laser ablation, etc) often focus solely on the variable at hand, rarely comparing to a control group or alternative therapy. This is partly due to small sample sizes, lack of adequate control populations, duration of followup, variability of expertise and infrastructure, and lack of collaboration across centers.
The Pediatric Epilepsy Research Consortium (PERC) was founded in 2011 as a network of U.S. Pediatric Epilepsy Centers dedicated to collaborative research into the diagnosis, evaluation and treatment of pediatric epilepsy. M. Scott Perry, M.D. leads the surgery subgroup of PERC and recently initiated a multicenter collaborative database collecting common data elements on every patient evaluated for epilepsy surgery, including epilepsy characteristics, components of evaluation, surgical procedures performed and outcome. The combined epilepsy centers of PERC perform an enormous number of pediatric epilepsy surgeries in the U.S., yet individually they each perform evaluations and surgeries differently. The study currently includes 18 centers across the U.S. and provides a unique opportunity to standardize common data elements captured for all patients evaluated for epilepsy surgery. From this data, there is potential to characterize the vast landscape of epilepsy surgery evaluation in the U.S., utilizing baseline data to match programs in a collaborative framework investigating the relative value of differing decision trees, approaches, surgical techniques and ultimately patient outcomes. Through this collaboration, the group hopes to expand the types of patient referred for epilepsy surgery, understand characteristics of patients unlikely to be helped by surgery, create standardized evaluation algorithms, and improve understanding of newly developed surgical procedures.
- Cook Children's Medical Center, Fort Worth, Texas
- Children's National Medical Center, Washington, D.C.
- Mount Sinai, New York, New York
- Lurie Children's Hospital, Chicago, Illinois
- Atrium Health, Charlotte, North Carolina
- University of Michigan, CS Mott Children's Hospital, Ann Arbor, Michigan
- Mayo Clinic, Rochester, Maine
- Children's Hospital of Orange County, Orange, California
- New York Presbyterian/Morgan Stanley Children's Hospital, New York, New York
- Children's Hospital Colorado, Aurora, Colorado
- Boston Children's Hospital, Boston, Maine
- Children's Hospital of Wisconsin, Milwaukee, Wisconson
- Weill Cornell Medical College, New York, New York
- Nationwide Children's Hospital, Columbus, Ohio
- University of Louisville Kosair Children's Hospital, Louisville, Kentucky
- Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
- University of Alabama-Birmingham, Birmingham, Alabama
- Texas Children's Hospital, Houston, Texas