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

患有发育性残疾的儿童和青少年接受广泛的儿科康复服务，以解决自我护理，移动和社会化方面的功能限制。《患者保护和平价医疗法案》要求在医疗保健评估中纳入患者的观点。然而，缺乏适合DD青少年的自我报告的医疗保健评估。为了准确地自我报告，青少年必须执行许多认知过程，包括注意力、工作记忆、长期记忆和判断。患有DD的青年的认知和识字缺陷使得大多数患有DD的青年无法获得征求自我报告的常见格式-书面、纸笔评估。技术，如AbleLink的ATLAS软件，已被证明可以支撑这些认知过程，并帮助青少年提供可靠的自我报告。拟议的STTR第一阶段将利用技术开发第一个PRO软件，旨在加强DD青少年自我报告的有效性和可靠性：PEDI-PRO。本项目将：1）确定初始系统规范，以实现可访问PEDI-PRO软件平台的要求。2)完善规范，以最大限度地提高原型PEDI-PRO的可用性和认知可及性，并使用临床样本，以及3）证明原型PEDI-PRO在14-25岁的DD过渡年龄青年使用时的可靠性。这项研究将使用迭代设计和评估过程，与青年小组和咨询委员会合作开发PEDI-PRO原型。首先，咨询委员会和青年小组将选择包括在初始原型中的问题，并为PEDI-PRO用户界面生成软件要求。这些要求将指导PEDI-PRO系统要求和规范的创建以及原型设计。适当时，将定制ATLAS软件平台，以满足这些要求并支持PEDI-PRO的工作流程。其次，我们将使用有声思维认知访谈和文档可用性理论与年轻DD（n = 15）和临床医生进行系统可用性量表（SUS）调查（n = 15）。原型将根据结果进行改进。第三，发育障碍青少年（n = 45）将在两周内完成两次PEDI-PRO，以确定自我报告随时间的一致性。如果结果是积极的，第二阶段将把所有的PEDI-PRO问题纳入原型，并扩大测试到一个大样本（250+），采取第一步走向计算机自适应测试方法。

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.