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BMC Medical Informatics and Decision Making

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Open Access 01-12-2020 | Care | Research article

Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention

Authors: E. C. Albrecht, V. C. Kaelin, B. L. Rigau, J. K. Dooling-Litfin, E. A. Scully, N. J. Murphy, B. M. McManus, M. A. Khetani, on behalf of the High Value Early Intervention Research Group

Published in: BMC Medical Informatics and Decision Making | Issue 1/2020

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. 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.

Results

Feasibility of implementing the YC-PEM e-PRO in routine EI care was mixed, as evidenced by low enrollment rates (21.0–29.2%), a high completion rate (85.3%), and limited missing data (80.6% of completed cases contained no missing data). More than half of the participants reported that the completion of the YC-PEM e-PRO was at least somewhat helpful, regardless of family income or caregiver education, providing support for its acceptability. As for its value, the YC-PEM e-PRO results were viewed by 64% of caregivers, whose desire for change most often pertained to the child’s participation in non-discretionary activities at home and structured activities in the community.

Conclusions

Results may support the implementation of YC-PEM e-PRO as a feasible, acceptable, and valued option for engaging families in planning the child’s EI care. Results also inform select intervention and protocol optimizations prior to undertaking a multi-site pragmatic trial of its effectiveness on family engagement and shared decision-making within an EI clinical workflow.

Trial registration

Trial number: NCT03904797. Trial registered at Clinicaltrials.gov. Registered 22 March 2019. Retrospectively registered.

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Title: Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention
Authors: E. C. Albrecht
V. C. Kaelin
B. L. Rigau
J. K. Dooling-Litfin
E. A. Scully
N. J. Murphy
B. M. McManus
M. A. Khetani
on behalf of the High Value Early Intervention Research Group
Publication date: 01-12-2020
Publisher: BioMed Central
Keyword: Care
Published in: BMC Medical Informatics and Decision Making / Issue 1/2020
Electronic ISSN: 1472-6947
DOI: https://doi.org/10.1186/s12911-020-01189-9

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention

Abstract

Background

Methods

Results

Conclusions

Trial registration

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Trial registration

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