Richard E Gliklich1, Mario Castro2, Michelle B Leavy3, Valerie G Press4, Amisha Barochia5, Christopher L Carroll6, Julie Harris7, Sarah S Rittner8, Robert Freishtat9, Reynold A Panettieri10, Giselle S Mosnaim11. 1. OM1, Boston, Mass; Harvard Medical School, Boston, Mass. Electronic address: rgliklich@om1.com. 2. Division of Pulmonary and Critical Care Medicine, Washington University School of Medicine, St Louis, Mo. 3. OM1, Boston, Mass. 4. Department of Medicine, Internal Medicine / Pediatrics, University of Chicago, Chicago, Ill. 5. Laboratory of Asthma and Lung Inflammation, Pulmonary Branch, National Heart, Lung, and Blood Institute, Bethesda, Md. 6. Connecticut Children's Medical Center, Hartford, Conn. 7. Children's Health Foundation, Portland, Ore. 8. Alliance Chicago, Chicago, Ill. 9. Children's Research Institute, Washington, DC. 10. Rutgers Institute for Translational Medicine & Science, Rutgers University, New Brunswick, NJ. 11. Division of Pulmonary, Allergy, and Critical Care Medicine, NorthShore University HealthSystem, Chicago, Ill.
Abstract
BACKGROUND: Asthma, a common chronic airway disorder, affects an estimated 25 million persons in the United States and 330 million persons worldwide. Although many asthma patient registries exist, the ability to link and compare data across registries is hindered by a lack of harmonization in the outcome measures collected by each registry. OBJECTIVES: The purpose of this project was to develop a minimum set of patient- and provider-relevant standardized outcome measures that could be collected in asthma patient registries and clinical practice. METHODS: Asthma registries were identified through multiple sources and invited to join the workgroup and submit outcome measures. Additional measures were identified through literature searches and reviews of quality measures and consensus statements. Outcome measures were categorized by using the Agency for Healthcare Research and Quality's supported Outcome Measures Framework. A minimum set of broadly relevant measures was identified. Measure definitions were harmonized through in-person and virtual meetings. RESULTS: Forty-six outcome measures, including those identified from 13 registries, were curated and harmonized into a minimum set of 21 measures in the Outcome Measures Framework categories of survival, clinical response, events of interest, patient-reported outcomes, resource utilization, and experience of care. The harmonized definitions build on existing consensus statements and are appropriate for adult and pediatric patients. CONCLUSIONS: The harmonized measures represent a minimum set of outcomes that are relevant in asthma research and clinical practice. Routine and consistent collection of these measures in registries and other systems would support creation of a national research infrastructure to efficiently address new questions and improve patient management and outcomes.
BACKGROUND:Asthma, a common chronic airway disorder, affects an estimated 25 million persons in the United States and 330 million persons worldwide. Although many asthmapatient registries exist, the ability to link and compare data across registries is hindered by a lack of harmonization in the outcome measures collected by each registry. OBJECTIVES: The purpose of this project was to develop a minimum set of patient- and provider-relevant standardized outcome measures that could be collected in asthmapatient registries and clinical practice. METHODS:Asthma registries were identified through multiple sources and invited to join the workgroup and submit outcome measures. Additional measures were identified through literature searches and reviews of quality measures and consensus statements. Outcome measures were categorized by using the Agency for Healthcare Research and Quality's supported Outcome Measures Framework. A minimum set of broadly relevant measures was identified. Measure definitions were harmonized through in-person and virtual meetings. RESULTS: Forty-six outcome measures, including those identified from 13 registries, were curated and harmonized into a minimum set of 21 measures in the Outcome Measures Framework categories of survival, clinical response, events of interest, patient-reported outcomes, resource utilization, and experience of care. The harmonized definitions build on existing consensus statements and are appropriate for adult and pediatric patients. CONCLUSIONS: The harmonized measures represent a minimum set of outcomes that are relevant in asthma research and clinical practice. Routine and consistent collection of these measures in registries and other systems would support creation of a national research infrastructure to efficiently address new questions and improve patient management and outcomes.
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