Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

Sabrin Rizk; Vera C. Kaelin; Julia Gabrielle C. Sim; Natalie J. Murphy; Beth M. McManus; Natalie E. Leland; Ashley Stoffel; Lesly James; Kris Barnekow; Elizabeth Lerner Papautsky; Mary A. Khetani

doi:10.1055/s-0042-1760631

Applied Clinical Informatics, Table of Contents

CC BY-NC-ND 4.0 · Appl Clin Inform 2023; 14(01): 091-107
DOI: 10.1055/s-0042-1760631

Special Section on Patient Engagement in Informatics

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

Authors

Sabrin Rizk‡^†

¹Children's Participation in Environment Research Lab, College of Applied Health Sciences, University of Illinois Chicago, Chicago, Illinois, United States

²Department of Occupational Therapy, University of Illinois Chicago, Chicago, Illinois, United States
Vera C. Kaelin‡^†

¹Children's Participation in Environment Research Lab, College of Applied Health Sciences, University of Illinois Chicago, Chicago, Illinois, United States

³Program in Rehabilitation Sciences, College of Applied Health Sciences, University of Illinois Chicago, Chicago, Illinois, United States
Julia Gabrielle C. Sim‡^†

¹Children's Participation in Environment Research Lab, College of Applied Health Sciences, University of Illinois Chicago, Chicago, Illinois, United States
Natalie J. Murphy

⁴Department of Health Systems, Management, and Policy, University of Colorado, Aurora, Colorado, United States
Beth M. McManus

⁴Department of Health Systems, Management, and Policy, University of Colorado, Aurora, Colorado, United States
Natalie E. Leland

⁵Department of Occupational Therapy, University of Pittsburgh, Pittsburgh, Pennsylvania, United States
Ashley Stoffel

²Department of Occupational Therapy, University of Illinois Chicago, Chicago, Illinois, United States
Lesly James

⁶Department of Occupational Therapy, Lenoir-Rhyne University, Columbia, South Carolina, United States
Kris Barnekow

⁷Department of Occupational Therapy, University of Wisconsin Milwaukee, Milwaukee, Wisconsin, United States
Elizabeth Lerner Papautsky‡^††

⁸Department of Biomedical and Health Information Sciences, University of Illinois Chicago, Chicago, Illinois, United States
Mary A. Khetani‡^††

¹Children's Participation in Environment Research Lab, College of Applied Health Sciences, University of Illinois Chicago, Chicago, Illinois, United States

²Department of Occupational Therapy, University of Illinois Chicago, Chicago, Illinois, United States

³Program in Rehabilitation Sciences, College of Applied Health Sciences, University of Illinois Chicago, Chicago, Illinois, United States

⁹CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada

Abstract

Objective The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs.

Methods An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation.

Results All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for “intervention characteristics,” (2) Six themes for “process,” (3) three themes for “inner setting,” and (4) four themes for “outer setting.” For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development (“intervention characteristics”). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes (“process”); and fostering a positive implementation climate (“inner setting”). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access (“outer setting”).

Conclusion Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

Keywords

early intervention - assessment - goal setting - implementation strategies - family engagement - facilitators and barriers - children - patient-reported outcomes

Full Text

References

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