Children and youth with developmental disabilities (DD) receive extensive pediatric rehabilitation services to address functional limitations in self-care, mobility, and socialization. The Patient Protection and Affordable Care Act mandates the inclusion of the patient's perspective in healthcare evaluation. Yet, there is a lack of self-reported healthcare assessments appropriate for youth with DD. To accurately self-report, youth must execute numerous cognitive processes involving attention, working memory, long term memory, and judgment. The cognitive and literacy deficits of youth with DD make common formats for soliciting self-reports--written, paper and pencil assessments--inaccessible to most youth with DD. Technology, such as AbleLink's ATLAS software, has been demonstrated to scaffold these cognitive processes and help youth to provide reliable self-reports. The 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 DD: the PEDI-PRO. This project will: 1) Identify initial system specifications that operationalize the requirements of an accessible PEDI-PRO software platform. 2) Refine specifications to maximize the usability and cognitive accessibility of the prototype PEDI-PRO with a clinical sample, and 3) Demonstrate the reliability of the prototype PEDI-PRO when used by transition-age youth with DD ages 14-25. This study will use an iterative design and evaluation process to develop the PEDI-PRO prototype in collaboration with a Youth Panel and Advisory Board. First, the Advisory Board and Youth Panel will select questions to include in the initial prototype and generate software requirements for a PEDI-PRO user interface. These requirements will guide the creation of PEDI-PRO System Requirements and Specifications and the prototype design. When appropriate, the ATLAS software platform will be customized to meet these requirements and support the PEDI-PRO's workflow. Second, we will use think-aloud cognitive interviews and document usability heuristics with youth with DD (n = 15) and conduct system usability scale (SUS) surveys with clinicians (n = 15). The prototype will be refined based on results. Third, youth with developmental disabilities (n = 45) will complete the PEDI-PRO twice in a two week time period to determine the consistency of self-reports over time. If results are positive, Phase II would incorporate all PEDI-PRO questions into the prototype and expand testing to a large sample (250+) to take the first steps towards a computer-adaptive testing approach.
Public Health Relevance Statement: Project Narrative Designing and Evaluating Outcome Assessment Software for Youth with Developmental Disabilities: The Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO). The lack of patient reported outcome (PROs) measures appropriate for youth with DD poses a significant problem; research indicates proxy respondents do not identify the same needs as youth, and the Patient Protection and Affordable Care Act mandates the inclusion of the patient's perspective. Technology is now available that can scaffold the cognitive processes needed to self-report, yet many currently available PROs use outdated paper and pencil forms that are inaccessible to youth with DD and not designed to meet their unique needs. This Phase I STTR will develop a prototype Pediatric Evaluation of Disability Inventory- Patient Reported Outcome (PEDI-PRO), the first PRO assessment system designed to bolster the validity and reliability of self-reports by transition-age youth with DD ages 14-25.
Project Terms: Address; Affordable Care Act; Age; Agreement; Attention; Autistic Disorder; base; Cerebral Palsy; Child; Childhood; Clinical; Cognitive; cognitive process; Collaborations; Computer software; Computers; Consensus; Custom; design; Development; Developmental Disabilities; Disability Evaluation; Ensure; Equipment and supply inventories; Evaluation; Expenditure; Feedback; Foundations; Funding; Gold; Health Care Costs; Healthcare; heuristics; Individual; Interview; iterative design; Judgment; Learning; literacy; long term memory; Measurement; Modeling; Outcome; Outcome Assessment; Outcome Measure; Paper; Parents; Patient Outcomes Assessments; Patient Self-Report; Patients; Performance; Phase; Population; Prevalence; Process; prospective; prototype; Proxy; Recruitment Activity; rehabilitation service; Rehabilitation therapy; Reporting; Research; Respondent; response; Sampling; scaffold; Self Care; Short-Term Memory; Small Business Technology Transfer Research; social; Socialization; Software Design; software systems; Spinal Dysraphism; Surveys; System; Technology; Testing; Time; United States National Institutes of Health; usability; Validity and Reliability; Work; Youth
