Abstracts

Rationale: Infantile spasms (IS) is most often heralded as a catastrophic epilepsy that significantly impacts the child's development and quality of life. Until recently, there was little consensus among clinicians about the treatment of IS. In 2004, the Child Neurology Society and the American Academy of Neurology developed the first practice parameter for the medical treatment of IS, and in 2010, the Infantile Spasms Working Group published Infantile Spasms: A U.S. Consensus Report. Although these documents represent significant steps towards standardizing the care of children with IS, it is important that specific and measurable quality-of-care indicators for children with IS be developed, so we can begin to assess and document variations in care, identify gaps in care, and understand how the individual elements of care may have an impact on the outcomes and quality of life of those affected. The objective of this study was to develop a comprehensive set of quality-of-care indicators for the management of children with infantile spasms (IS) in the United States encompassing evaluation, diagnosis, treatment, and the prevention and management of side-effects and co-morbidities.Methods: We used the RAND/UCLA Appropriateness Method, a modified Delphi method, to develop the indicators. The process involved a review of current literature and guidelines on the management of IS, drafting of candidate indicators by the study team, and two rounds of anonymous ratings by an expert panel (nominated by leaders of Child Neurology Society, American Epilepsy Society, and the National Institute for Neurologic Disorders). The expert panel met face-to-face to discuss each indicator between the two rounds of ratings. Panelists rated each indicator on validity, feasibility, and importance. The panelists included Dennis J. Dlugos, William D. Gaillard, Patricia A. Gibson, Gregory L. Holmes, Sarah Hunt, Teresita Nelson, John M. Pellock, W. Donald Shields, and Shlomo Shinnar.Results: From the initial group of 50 proposed indicators, the panel recommended 21 indicators: five indicators described diagnosis (e.g., time to diagnosis); two described investigation into etiology (e.g., reevaluation within 6 months if IS persists in the absence of diagnosis); 12 described treatment (e.g., ACTH and VGB as first line therapies ); one described education (review of side effects of medication with caregivers); and one described outcomes (assessment of developmental outcomes by a healthcare provider). With the importance rating, the panel identified 8 indicators that are most likely to have a large positive impact on improving quality of life and/or health outcomes for children with IS.Conclusions: The proposed set of 21 indicators can serve as a starting point for assessing the quality of care for children with IS, documenting variations and gaps in care, and informing future research and quality improvement interventions.