BackgroundElectronic patient-reported outcomes (e-PROs) may provide valid and feasible options for obtaining family input on their child’s functioning for care planning and outcome monitoring, but they have not been adopted into early intervention (EI). The purpose of this pilot study was to evaluate the feasibility of implementing technology-based functional assessment into EI practice and to examine child, family, service, and environmental correlates of caregiver-reported child functioning in the home.MethodsIn a cross-sectional design, eight individual EI providers participated in a 90-min technology-based functional assessment training to recruit participants and a 60-min semi-structured focus group post data collection. Participants completed the Young Children’s Participation and Environment Measure (YC-PEM) home section online and Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) via iPad. Participants’ EI service use data were obtained from administrative records.ResultsA total of 37 caregivers of children between 6 and 35 months old (mean age = 19.4, SD = 7.7) enrolled, a rate of 44% (37/84) in 2.5 months. Providers suggested expanding staff training, gathering data during scheduled evaluations, and providing caregivers and providers with access to assessment summaries. Caregivers wanted their child’s participation to change in 56% of home activities. Lower caregiver education and higher EI intensity were related to less child involvement in home activities.ConclusionsImplementing technology-based functional assessment is feasible with modifications, and these data can be useful for highlighting child, family, and EI service correlates of caregiver-reported child functioning that merit further study. Feasibility results informed protocol modifications related to EI provider training, timing of data collection, and management of EI service use data extraction, as preparation for a subsequent scale-up study that is underway.

Background Electronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation. Methods This second pilot study involved families enrolled in a large EI program (n=1040 families) in concert with their implementation of a statewide quality improvement initiative for care plan development and outcomes reporting. A total of 22 EI service coordinators and supervisors were engaged in three phases: initial e-PRO intervention, peer mentor enhancement, and standard recruitment protocol. Results Implementation of the e-PRO intervention and peer mentoring enhancement yielded low enrollment rates over the first six months (n=17). A standard recruitment protocol has resulted in enrollment growth (n=83) towards the targeted enrollment rate (n=832). Conclusions This study reports on early insights for building and sustaining a productive academic-community partnership for e-PRO implementation to support family-centered coordinated care. Lessons learned from this academic-community partnership with respect to strategies for enhancing community significance, collaboration, return, and control are discussed as they inform further development of this intervention prior to scale-up.

Background: Family-centered care is a valued approach to improving child and family outcomes in early intervention (EI), yet there is need to implement interventions that support information exchange for shared decision-making when planning and monitoring EI care. This study aims at estimating the feasibility, acceptability, and value of implementing the Young Children's Participation and Environment Measure (YC-PEM), a valid electronic patient-reported outcome (e-PRO) that is designed to support family engagement when planning care and monitoring outcomes of care. Methods: Data were gathered from caregivers (N = 139) that were enrolled in a Phase 1 trial of the YC-PEM e-PRO as implemented within 1 month of their child's next EI evaluation of progress. YC-PEM e-PRO feasibility was estimated according to enrollment and completion rates, and mean completion time. Chi-square tests were used to examine parent perceptions of YC-PEM e-PRO acceptability by caregiver education and family income. Caregiver feedback via open-ended responses were content coded to inform intervention and protocol optimizations. YC-PEM e-PRO value was estimated via composite and item-level scores to capture the extent of participation difficulty in home and community activities, and common areas of need regarding caregivers desired change in their child's participation.

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Date Presented 03/29/20 This study evaluated the feasibility, acceptability, and value of implementing the Young Children’s Participation and Environment Measure (YC-PEM) as an evidence-based, family-centered, and electronic participation-focused assessment option within an early-intervention setting. Results support the implementation of YC-PEM as a feasible, acceptable, and valued option for engaging families in planning family-centered and participation-focused early-intervention services. Primary Author and Speaker: Vera Kaelin Additional Authors and Speakers: Mary Khetani Contributing Authors: Erin Albrecht, Briana Rigau, Jodi Dooling-Litfin, Elizabeth Scully, Natalie Murphy, Beth McManus