2 Enabling self-reported outcomes for youth with developmental disabilities: 3 The Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO)- 4 Phase II 5 6 The lack of patient reported outcome measures (PROMs) appropriate for youth with 7 neurodevelopmental disabilities (DD) and related cognitive impairments poses a significant 8 problem for healthcare research and practice. Parents and other professionals do not identify 9 the same needs as youth, and failure to engage youth with DD in healthcare evaluation 10 compromises healthcare quality and outcomes. The market demand for a PROM for this 11 population is high given the prevalence of DD and the significant healthcare costs for this 12 population. In Phase I, we demonstrated that our technology can help youth with DD and related 13 cognitive impairments complete PROMs. The PEDI-PRO prototype demonstrated strong 14 internal reliability and elicited consistent scores from 56 youth ages 14-22 with DD and 15 cognitive impairments. Clinicians across the country (n =14) established the usability of the 16 PEDI-PRO prototype. This Phase II STTR will build a clinically robust PEDI-PRO Assessment 17 Software to address the market gap in PROMs for youth with DD.
Specific aims : 18 1) Transform the Phase I PEDI-PRO concept prototype into a robust, fully functioning 19 assessment software system for use in rehabilitation. 20 2) Test and optimize the psychometric properties of the PEDI-PRO item bank to ensure valid 21 and reliable measurement. 22 3) Design a clinically interpretable score report that accurately characterizes youth?s functional 23 performance. 24 The Phase II study design adheres to the Consensus-based Standards for the Selection of 25 Measurement Instruments (COSMIN) framework to establish the validity and reliability of the 26 PEDI-PRO. We will continue our partnership with a Youth Panel (n = 5) and Advisory Board (n = 27 8). We will design the PEDI-PRO Clinical Management System (PCMS: a HIPPA compliant 28 clinician administrative dashboard) and incorporate 45 additional items (15 per domain, selected 29 by the Youth Panel and Advisory Board) into the PEDI-PRO. Second, 300 youth with DD will 30 complete the PEDI-PRO. We will adhere to COSMIN standards and examine the structural 31 validity and internal reliability using both classical test theory (CTT) and item response theory 32 (IRT). We will also use hypothesis testing to establish known groups and convergent validity. 33 Third, we will incorporate automatic scoring into the PEDI-PRO Assessment Software; we will 34 use a mixed methods to design and evaluate two score report prototypes. This Phase II will 35 enable AbleLink Technologies to aggressively pursue commercialization through a 9 month to 36 market timeline and distribute the PEDI-PRO Assessment Software for a variety of platforms.
Enabling self-reported outcomes for youth with developmental disabilities: The Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO)- Phase II The lack of patient reported outcome measures (PROMs) appropriate for youth with DD poses a significant problem; research indicates proxy respondents do not identify the same needs as youth, and patient advocates and funders are increasingly calling for services considerate of patient-reported outcomes. Technology is now available that can scaffold the cognitive processes needed to self-report, yet many currently available PROMs use outdated paper and pencil forms that are not designed to meet the unique needs of youth with DD. This Phase II STTR will leverage our team?s Phase I research and build a clinically robust PEDI-PRO Assessment Software to address the market gap in PROMs for youth with DD.
