Development of performance indicators for the primary care management of pediatric epilepsy: Expert consensus recommendations based on the available evidence

Purpose: To use available evidence and expert consensus to develop performance indicators for the evaluation and management of pediatric epilepsy. Methods: We used a three-step process to develop the performance indicators. First, research findings were compiled into evidence tables focusing on different clinical issues. Second, an advisory panel of clinicians, educational and public health experts, and families of children with epilepsy reviewed the evidence. The advisory group used the evidence to draft a preliminary set of performance indicators for pediatric epilepsy management. Third, 13 internationally recognized experts in pediatric neurology or epilepsy rated the value of these indicators on a 5-point scale [1 (essential) to 5 (not necessary)] in a two-round Delphi process. Positive consensus was reached if >= 80% of experts gave an indicator a "1" rating and negative consensus if > 80% gave an indicator a "5" rating. Indicators that achieved positive consensus during either round of the Delphi process constituted the final set of indicators. Results: Of the 68 draft performance indicators, the expert panel members achieved positive consensus on 30 performance indicators: eight indicators related to diagnostic strategies and seizure classification, nine related to antiepileptic drug use, six related to cognitive and behavioral issues, six related to quality of life, and three related to specialty referrals. Conclusions: We identified 30 potential indicators for evaluating the care provided to pediatric patients with epilepsy. The next step is to examine the relation of these performance indicators to clinical outcomes and health care utilization among pediatric patients with epilepsy.