Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused
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(2020) 20:199
RESEARCH ARTICLE
Open Access
Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participationfocused care in early intervention E. C. Albrecht1†, V. C. Kaelin2†, B. L. Rigau3, J. K. Dooling-Litfin4, E. A. Scully4, N. J. Murphy5, B. M. McManus5‡, M. A. Khetani2,3,6*‡ and on behalf of the High Value Early Intervention Research Group4
Abstract 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. YCPEM 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. (Continued on next page)
* Correspondence: [email protected] † Albrecht, E. and Kaelin, V.C. are co-first authors. ‡ McManus, B. and Khetani, M.A. are co-senior authors. 2 Rehabilitation Sciences, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL 60612, USA 3 Department of Occupational Therapy, College of Applied Health Sciences, University of Illinois at Chicago, 1919 West Taylor Street, Room 316A, Chicago, IL 60612-7250, USA Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly f
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