Early Intervention Outcomes Research using Innovative Patient-Reported Outcome (PRO) Measures

 描述（由申请人提供）：原理和目标：大约5,800名患有发育障碍的婴儿和幼儿（例如，脑瘫、唐氏综合征、复杂的慢性病），并每年延迟访问早期干预科罗拉多（EI-CO）。EI-CO的主要目标是帮助儿童在家庭和社区中发挥最佳功能，以增加早期技能的获得，并尽量减少未来的康复和特殊教育服务的使用，但EI-CO的影响知之甚少。该提案通过以下方式满足了这一需求：1）检查EI-CO服务使用的差异（目标1）和2）估计EI-CO服务使用对EI结果的影响（目标2）。研究方法：使用了2008-2013年期间主要EI-CO计划（n= 3，500）的现有EI-CO数据的次要分析和登记家庭（n=832）的主要数据收集。主要因变量为1）EI服务使用（目标1）和2）EI结果（目标2）。EI服务的使用将根据计划计费数据进行衡量，EI服务的使用量将根据服务频率和持续时间进行计算。EI结果将通过解决功能任务表现的在线问卷进行测量（例如，移动性）和活动参与（例如，个人护理管理）。计量经济学模型将用于估计每个结果的儿童和家庭特征的条件下，功能的结果，服务的使用，和感知的环境障碍。项目影响和与NCMRR的相关性：迫切需要关于EI服务相对于功能结果的充分性的强有力的研究证据，以改善EI服务的提供。然而，关于教育信息服务的使用和成果的知识差距构成了建立和转化这一知识的重大障碍。项目结果将产生重要的新知识的差异EI-CO服务的使用和服务使用的差异如何有助于功能结果的变化。这些可交付成果将提高我们成功竞争NIH R 01基金的机会，以进行规模扩大的多中心EI-CO结果研究。

 DESCRIPTION (provided by applicant): Rationale and Objectives: Approximately 5,800 infants and toddlers with developmental disabilities (e.g., cerebral palsy, Down syndrome, complex chronic conditions) and delays access Early Intervention Colorado (EI-CO) annually. Primary goals of EI-CO is to help children optimally function at home and in the community in order to increase early skill acquisition and minimize future rehabilitation and special education service use, but the effects of EI-CO are poorly understood. This proposal addresses this need by 1) examining disparities in EI-CO service use (Aim 1) and 2) estimating the impact of EI-CO service use on EI outcomes (Aim 2). Methods: Secondary analyses of existing EI-CO data from a major EI-CO program between 2008-2013 (n=3,500) and primary data collection of enrolled families (n=832) are used. Primary dependent variables are 1) EI service use (Aim 1) and 2) EI outcomes (Aim 2). EI service use will be measured from program billing data and dosage of EI service use will be calculated based upon service frequency and duration. EI outcomes will be measured from online questionnaires addressing functional task performance (e.g., mobility) and activity participation (e.g., personal care management). Econometric models will be used to estimate each outcome conditional on child and family characteristics and, for functional outcomes, service use, and perceived environmental barriers. Project Impact and Relevance to NCMRR: There is critical need for robust research evidence about the adequacy of EI services relative to functional outcomes to improve EI service delivery. However, knowledge gaps about EI service use and outcomes have posed significant barriers to building and translating this knowledge. Project results will yield important new knowledge about disparities in EI-CO service use and how disparities in service use contribute to variability in functional outcomes. These deliverables will improve our chances of successfully competing for NIH R01 funds to conduct a scale-up multi-site EI-CO outcomes study.