Designing and Evaluating Outcome Assessment Software for Youth with Developmental Disabilities: The Pediatric Evaluation of Disability Inventory- Patient Reported Outcome (PEDI-PRO)

Children and youth with developmental disabilitiesDDreceive extensive pediatric rehabilitation services to address functional limitations in self caremobilityand socializationThe Patient Protection and Affordable Care Act mandates the inclusion of the patient s perspective in healthcare evaluationYetthere is a lack of self reported healthcare assessments appropriate for youth with DDTo accurately self reportyouth must execute numerous cognitive processes involving attentionworking memorylong term memoryand judgmentThe cognitive and literacy deficits of youth with DD make common formats for soliciting self reportswrittenpaper and pencil assessmentsinaccessible to most youth with DDTechnologysuch as AbleLink s ATLAS softwarehas been demonstrated to scaffold these cognitive processes and help youth to provide reliable self reportsThe proposed STTR Phase I will harness technology to develop the first PRO software designed to bolster the validity and reliability of self reports by youth with DDthe PEDI PROThis project willIdentify initial system specifications that operationalize the requirements of an accessible PEDI PRO software platformRefine specifications to maximize the usability and cognitive accessibility of the prototype PEDI PRO with a clinical sampleandDemonstrate the reliability of the prototype PEDI PRO when used by transition age youth with DD agesThis study will use an iterative design and evaluation process to develop the PEDI PRO prototype in collaboration with a Youth Panel and Advisory BoardFirstthe Advisory Board and Youth Panel will select questions to include in the initial prototype and generate software requirements for a PEDI PRO user interfaceThese requirements will guide the creation of PEDI PRO System Requirements and Specifications and the prototype designWhen appropriatethe ATLAS software platform will be customized to meet these requirements and support the PEDI PRO s workflowSecondwe will use think aloud cognitive interviews and document usability heuristics with youth with DDnand conduct system usability scaleSUSsurveys with cliniciansnThe prototype will be refined based on resultsThirdyouth with developmental disabilitiesnwill complete the PEDI PRO twice in a two week time period to determine the consistency of self reports over timeIf results are positivePhase II would incorporate all PEDI PRO questions into the prototype and expand testing to a large sampleto take the first steps towards a computer adaptive testing approach