title: Pediatric Rehabilitation Services for Children With Cerebral Palsy: What Can Existing Data Sources Tell Us?
abstract: Knowledge about associated service utilization patterns and positive outcomes in children with cerebral palsy (CP) of varying levels of severity is a national priority. Families, clinicians, program directors, and policy makers need this information for clinical decision-making and service planning. Existing data sources in the United States that contain information about children with CP, their health, function, well being, and utilization of health services may add to our existing knowledge. We provide a summary of fourteen national, state, and local sources' data: where the data come from, challenges and/or specific considerations when using or accessing information, and specific data elements included. Currently available sources of data can provide meaningful information for policy, practice, and program development. We propose questions for future inquiry and suggest elements that may be useful for when developing data sources specific to physical therapy and individuals with CP. A physical therapy specific registry is warranted.
authors.affiliation: University of Hartford (Dr Gannotti), West Hartford, Connecticut; Cincinnati Children's Hospital Medical Center (Dr Bailes), Cincinnati, Ohio; Seattle Children's Research Institute (Dr Bjornson), University of Washington, Seattle, Washington; Drexel University (Dr O'Neil), Philadelphia, Pennsylvania; Chapman University (Dr Grant-Buettler), Orange, California; and Virginia Commonwealth University (Dr Dusing), Richmond, Virginia.
authors.forename: Mary E
authors.initials: ME
authors.lastname: Gannotti
authors.forename: Amy
authors.initials: A
authors.lastname: Bailes
authors.forename: Kristie
authors.initials: K
authors.lastname: Bjornson
authors.forename: Maggie
authors.initials: M
authors.lastname: OʼNeil
authors.forename: Marybeth
authors.initials: M
authors.lastname: Grant-Buettler
authors.forename: Stacey
authors.initials: S
authors.lastname: Dusing
mesh_terms: D002547:Cerebral Palsy / Q000453:epidemiology* / Q000534:rehabilitation*; D002648:Child; D002662:Child Health Services / Q000706:statistics & numerical data*; D006801:Humans; D016247:Information Storage and Retrieval; D026741:Physical Therapy Modalities / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology