Early Intervention Colorado (EI-CO) Participant Characteristics, Service Use, and Patient-Reported Outcomes, Colorado, 2017-2018 (ICPSR 37320)
Version Date: Aug 1, 2019 View help for published
Principal Investigator(s): View help for Principal Investigator(s)
Vera C. Kaelin, University of Illinois at Chicago. College of Applied Health Sciences. Rehabilitation Sciences; Elizabeth A. Scully, Rocky Mountain Human Services; James E. Graham, Colorado State University. College of Health and Human Sciences; Beth McManus, Colorado School of Public Health. Health Systems, Management, and Policy; Mary A. Khetani, University of Illinois at Chicago. College of Applied Health Sciences. Occupational Therapy
Summary View help for Summary
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.
Citation View help for Citation
Funding View help for Funding
Subject Terms View help for Subject Terms
Geographic Coverage View help for Geographic Coverage
Restrictions View help for Restrictions
Access to these data is restricted. Users interested in obtaining these data must complete a Restricted Data Use Agreement, specify the reason for the request, and obtain IRB approval or notice of exemption for their research.
Distributor(s) View help for Distributor(s)
Time Period(s) View help for Time Period(s)
Date of Collection View help for Date of Collection
Data Collection Notes View help for Data Collection Notes
The survey instruments used in this study are not available as part of this data collection. Secondary users can request access to the Young Children's Participation and Environment Measure (YC-PEM) and Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) through the instrument websites.
This study is related to Early Intervention Colorado (EI-CO) Participant Characteristics, Service Use, and Outcomes, Colorado, 2014-2016 (ICPSR 37131)
Study Purpose View help for Study Purpose
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.
Study Design View help for Study Design
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.
Sample View help for Sample
A total of 163 families were enrolled in the study between March 2017 and August 2018, with a final enrollment of 149 (139 English, 10 Spanish). Each caregiver confirmed his or her eligibility online by verifying that they fit the study inclusion criteria. For the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT e-PRO) measurement, 8 of the 139 families declined consent and 16 were lost to follow-up. Consequently, 115 families completed the PEDI-CAT e-PRO. Similarly, Child Outcomes Summary (COS) scores are not recorded for all early intervention (EI) enrolled children in this dataset. This is because the EI program did not routinely capture COS data electronically during the entire study period. The existing dataset is therefore available as either the whole sample or as the sub-sample of children with complete PEDI-CAT e-PRO and COS information.
Time Method View help for Time Method
Universe View help for Universe
Caregivers that were at least 18 years old; could read, write, and speak English or Spanish; had internet access; and had a child between 0-3 years old who was deemed early intervention service eligible for at least 3 months.
Unit(s) of Observation View help for Unit(s) of Observation
Method of Data Collection View help for Method of Data Collection
Mode of Data Collection View help for Mode of Data Collection
Presence of Common Scales View help for 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)
Original Release Date View help for Original Release Date
Version History View help for Version History
2019-08-01 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.
The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.
- The citation of this study may have changed due to the new version control system that has been implemented.
This study is maintained and distributed by Advancing Research on Disability.