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Defining intractability: comparisons among published definitions.

Anne T Berg1, Molly M Kelly

  • 1Department of Biology, Northern Illinois University, DeKalb, IL 60115, U.S.A. atberg@niu.edu

Epilepsia
|February 28, 2006
PubMed
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Definitions for intractable epilepsy vary, impacting research comparability. This study compared six definitions in children, finding strong but imperfect agreement and a link to long-term outcomes, suggesting a need for consensus.

Area of Science:

  • Neurology
  • Clinical Epidemiology

Background:

  • Intractable epilepsy lacks a unified definition, hindering cross-study comparisons.
  • Varied definitions complicate research and clinical guideline development.

Purpose of the Study:

  • To compare six different published definitions of intractable epilepsy.
  • To assess agreement among definitions and their association with long-term remission.
  • To highlight the need for consensus on defining intractable epilepsy.

Main Methods:

  • A prospective study of 613 children with newly diagnosed epilepsy.
  • Application and comparison of six intractability definitions within 5 years of diagnosis.
  • Calculation of observed and chance-adjusted agreement (kappa) and relative risk for remission.

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Main Results:

  • Intractable epilepsy prevalence varied from 9-24% based on definition.
  • Observed agreement ranged from 0.83-0.96; kappa values ranged from 0.45-0.79.
  • All definitions strongly correlated with long-term remission status.

Conclusions:

  • Agreement among intractable epilepsy definitions is substantial but not absolute.
  • All evaluated definitions predict longer-term outcomes.
  • A consensus process is recommended to standardize definitions for research and clinical practice.