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Quality-of-care indicators for infantile spasms
C Jason Wang1, Rinat Jonas, Chong Min Fu
1Department of Pediatrics, Stanford University School of Medicine, Stanford, CA, USA. cjwang1@stanford.edu
Insights
This study created quality-of-care indicators for infantile spasms (IS) in children. These 21 indicators, including 8 high-impact ones, aim to improve care and outcomes for infants with this neurological disorder.
Area of Science:
- Pediatric Neurology
- Quality Improvement Science
Background:
- Infantile spasms (IS) are a severe epilepsy syndrome in infants.
- Optimal management requires a comprehensive approach addressing diagnosis, treatment, and comorbidities.
- Existing quality metrics for IS care are limited.
Purpose of the Study:
- To develop a comprehensive set of quality-of-care indicators for infantile spasms management in the United States.
- To establish evidence-based metrics for evaluating and improving care for children with IS.
Main Methods:
- Utilized the RAND/UCLA Modified Delphi Method involving expert consensus.
- Conducted a literature review and convened an expert panel from leading neurological societies.
- Indicators were anonymously rated, discussed face-to-face, and re-rated on validity, feasibility, and importance.
Main Results:
- A total of 21 quality-of-care indicators for IS management were recommended.
- Eight indicators were identified as having the most significant potential impact on patient outcomes.
- The indicators cover evaluation, diagnosis, treatment, and side effect/comorbidity management.
Conclusions:
- The developed indicators provide a framework for assessing quality of care in infantile spasms.
- These metrics can identify variations and gaps in care delivery.
- The indicators will inform future research and quality improvement initiatives for IS.
Abstract:
We developed a comprehensive set of quality-of-care indicators for the management of children with infantile spasms in the United States, encompassing evaluation, diagnosis, treatment, and prevention and management of side effects and comorbidities. The indicators were developed using the RAND/UCLA Modified Delphi Method. After a focused review of the literature and guidelines by the study team, an expert panel (nominated by leaders of Child Neurology Society, American Epilepsy Society, and National Institute for Neurologic Disorders) rated the draft indicators anonymously, met face-to-face to discuss each indicator, and rerated the revised indicators on validity, feasibility, and importance. The panel recommended 21 indicators, of which 8 were identified as most likely to have a large positive impact on improving quality of life and/or health outcomes for children with infantile spasms. The proposed indicators can be used to assess and document variations and gaps in quality-of-care and inform future research and quality improvement interventions.
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