Abstracts

The development of standard process measures is a necessary step to evaluating and optimizing outcomes in pediatric epilepsy care. Many aspects of care have not been studied adequately and the clinical issues affecting the management of children with epilepsy have not been translated into specific process measures. This study used available evidence and expert consensus to generate clinically relevant process elements to evaluate the management of children with epilepsy. Specific clinical processes were identified using available literature and expert opinion. Research evidence was compiled into broad pediatric clinical management issues. An advisory group of clinicians, education and public health experts, and families of children with epilepsy reviewed the evidence, drafting a preliminary set of process elements for pediatric epilepsy management. A Delphi process was then applied to these elements in two steps.
Thirteen expert clinicians and researchers rated elements for their necessity in the primary care of pediatric epilepsy patients (essential to care [1] to not necessary for care [5]). Consensus was defined as 80% or more of respondents giving an element a 1 rating (positive) or a 5 rating (negative). Elements for which there was no consensus after Round 2 were excluded from the final recommendations. Round 1 produced positive consensus on 12 of the 68 original care elements and consensus to exclude one element. Of the 55 elements remaining for Round 2; three were unchanged, 19 were revised and 33 were combined with other elements. In total, the expert panel achieved positive consensus on 30 care process elements as indicators of quality pediatric epilepsy care. Elements address optimal timing of diagnosis, anticonvulsant initiation and discontinuation, use of EEG or imaging, value (or not) of routine AED monitoring, advising families regarding safety risks in epileptic children and so forth (full details will be presented in tabular form at the meeting) Experts agreed that several specific measurable activities indicate quality care is taking place in pediatric epilepsy management. Although epilepsy-specific, certain care elements reflect underlying processes of general medical practice important to all pediatric encounters. Other components likely to be necessary for quality care were not adopted by the consensus group possibly because of the inherent difficulty in measuring/assessing their impact. The set of process elements generated by this approach is a means of evaluating the quality of pediatric epilepsy management in primary care. Such an approach could help to define practice parameters aimed specifically at pediatric epilepsy diagnosis and management. (Supported by the Centers for Disease Control and Prevention, through the Association of American Medical Colleges, MM-0531-03/03.)