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The Individuals with Disabilities Education Act authorizes states to create early intervention (EI) programming to provide developmental and therapeutic services to infants and toddlers with a developmental condition; EI programs are mandated to report on child and family outcomes for purposes of accountability and quality improvement. For both purposes, there is critical need for research evidence on the adequacy of EI services. The researchers for this study partnered with a large urban EI program in Colorado that had recently transitioned to electronic data capture and was implementing a statewide initiative to facilitate function-focused care with individual families and paired collected electronic patient-reported outcomes (e-PRO) data with EI administrative data on child and family characteristics and service use to more fully examine EI service adequacy relative to patient-important outcomes. This study collected information from Young Children's Participation and Environment Measure (YC-PEM e-PRO) on home, environment, and community participation, involvement, and desired change. Measurements were also collected from the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT e-PRO) on mobility, social cognitive, and daily activities domains. The Child Outcomes Summary (COS) was used to capture functional performance related to having positive social relationships, acquiring and using knowledge and skills, and taking appropriate action to meet needs. Early Intervention Service Use measured EI intensity, whether child received specific services including physical therapy (PT), occupational therapy (OT), speech therapy (ST), psychology, or developmental intervention (DI), and the total number of service hours received within each discipline. Demographic variables include reasons child received EI services, number of developmental delay conditions, age, race, and ethnicity; as well as caregiver's education, employment, number of children at home, income, and insurance type.

The first aim of this project involves using the data that early intervention (EI) programs currently capture electronically to examine EI service adequacy. The second aim of this project involves piloting the feasibility, acceptability, and value of implementing two psychometrically sound electronic patient-reported outcomes (e-PROs) within an EI workflow: 1) the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT e-PRO), evaluating children's discrete task performance; and 2) the Young Children's Participation and Environment Measure (YC-PEM e-PRO), evaluating the child's participation in valued home and community activities.

Researchers initially met with 22 early intervention (EI) service coordinators to finalize recruitment processes and materials. Service coordinators then approached eligible caregivers on their caseloads, when the child was within a month of their next annual review of progress. Eligible and interested caregivers were directed to a study website to confirm their study eligibility per the inclusion criteria. Caregivers who provided informed consent online proceeded to complete an online demographic questionnaire, followed by an electronic patient-reported outcome (e-PRO) assessment of their child's participation in home and community activities. After completion of the e-PRO assessment, participants were asked to indicate their availability for having a second e-PRO administered to them via iPad and over the telephone. Once they confirmed their availability, each caregiver received immediate access to an online report summarizing their responses to share with their child's EI team.

ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection: Checked for undocumented or out-of-range codes..

Presence of Common Scales: Young Children's Participation and Environment Measure (YC-PEM e-PRO); Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT e-PRO); Child Outcome Summary (COS);

Datasets:

• DS1: Early Intervention Colorado (EI-CO) Participant Characteristics, Service Use, and Patient-Reported Outcomes, Colorado, 2017-2018, Public-Use Data