Effectiveness and scalability of an electronic patient-reported outcome measure and decision support tool for family-centred and participation-focused early intervention: PROSPECT hybrid type 1 trial protocol

Kaelin, Vera; Villegas, Vivian; Chen, Yifan; Murphy, Natalie; Papautsky, Elizabeth Lerner; Litfin, Jodi; Leland, Natalie E.; Maheshwari, Varun; McManus, Beth M.; Khetani, Mary

doi:10.1136/bmjopen-2021-051582

Cited by 5 publications

(6 citation statements)

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“…Their ideas yield initial core requirements for the design and development of YC-PEM e-PRO interface(s) with customizable dashboards tailored to the distinct informational needs of each EI stakeholder group. 40 52 For example, they proposed custom content displays (item-level vs. aggregate YC-PEM e-PRO results) and tailored timing of reminders and report information. Human factors and health informatics expertise may ensure that these interfaces include human-centered data entry and easy-to-comprehend visualizations through co-design and iterative usability evaluation and refinement.…”

Section: Discussionmentioning

confidence: 99%

“…We registered the Parent-Reported Outcomes to Strengthen Partnership within the Early Intervention Care Team (PROSPECT) trial at clinicaltrials.gov (NCT04562038) and published protocol details. 40 …”

Section: Methodsmentioning

confidence: 99%

“…Quantitative data on implementation were collected as part of a larger pragmatic trial on the effectiveness of the YC-PEM e-PRO, when paired with a co-designed, program-specific decision-support guide, on select outcomes. 40 These quantitative data on implementation were summarized and used to prompt stakeholders to explain findings during qualitative data collection. 40 Specific data on sample characteristics and implementation included: (1) items administered to caregivers online (e.g., “How helpful was the [instructional] video for completing the YC-PEM e-PRO questionnaire?” [from 1 = not helpful to 4 = very helpful]); and (2) items administered to SC online during their monthly meetings (e.g., “How helpful were monthly meetings with other SC in the intervention group” [from 1 = not helpful to 4 = very helpful]; “How helpful were the YC-PEM e-PRO results within your IFSP documentation to guide your conversation with parents during the annual evaluation of progress” [from 1 = not helpful to 4 = very helpful]).…”

Section: Methodsmentioning

confidence: 99%

Section: Data Collection and Proceduresmentioning

confidence: 99%

“…This study is part of the latest phase of YC-PEM e-PRO implementation research, 40 with two aims: (1) to identify facilitators and barriers for implementing the YC-PEM e-PRO option in an EI program, from the perspectives of families in EI, SC (i.e., facilitate EI access and coordinate services per IFSPs), and PL (i.e., oversee EI program's infrastructure and functions; aim 1); and (2) to examine the relevance of supports and strategies for scaling its implementation across multiple state and local EI programs (Aim 2). The implementation outcomes captured in this study will guide decisions about YC-PEM e-PRO scalability across EI programs with electronic data capture systems.…”

Section: Objectivesmentioning

confidence: 99%

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

et al. 2023

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Data Collection and Proceduresmentioning

confidence: 99%

Section: Objectivesmentioning

confidence: 99%

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

et al. 2023

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Formative evaluation of an entrepreneurial funding mechanism for training knowledge brokers in occupational therapy relevant research spaces

Bosak

Fulford

Khetani

2023

World Federation of Occupational Therapists Bulletin

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Establishing and sustaining authentic organizational partnerships in childhood disability research: lessons learned

et al. 2023

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There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is accumulating research evidence to suggest the benefits of engaging children/youth with disabilities and their parents/families in research partnerships; however, less is known about the benefits of, and challenges to, engaging organizations as partners in research. The purpose of this commentary is to reflect on successful organizational partnership experiences from the perspectives of researchers at an internationally-recognized childhood disability research centre (CanChild), and to identify and share key ingredients for developing partnerships between organizations and academic institutions. A companion study is underway to examine partnership experiences with CanChild from the partners’ perspective. Four CanChild researchers and two co-facilitators participated in a collaborative auto-ethnography approach to share experiences with organizational research partnerships and to reflect, interpret, and synthesize common themes and lessons learned. The researchers and facilitators met virtually via Zoom for 105 min. Researchers were asked to discuss the following: the formation of their organizational partnerships; if/how partnerships evolved over time; if/how partnerships were sustained; and lessons learned about benefits and challenges to building research partnerships with organizations. The meeting was recorded, transcribed verbatim, and analyzed by the facilitators to identify and synthesize common experiences and reflections. Multiple rounds of asynchronous reflection and feedback supported refinement of the final set of analytic themes. Researchers agreed that partnerships with organizations should be formed through a mutual interest, and that partnerships evolved by branching to include new organizations and researchers, while also involving trainees. Researchers identified the importance of defining roles and responsibilities of key individuals within each partnering group to sustain the partnership. Lessons learned from organizational partnerships included reciprocity between the partnering organization and academic institution, leveraging small pockets of funds to sustain a partnership over time, and building a strong rapport with individuals in a partnership. This commentary summarized lessons-learned and provided recommendations for researchers and organizations to consider when forming, growing, and sustaining research partnerships over time.

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Effectiveness and scalability of an electronic patient-reported outcome measure and decision support tool for family-centred and participation-focused early intervention: PROSPECT hybrid type 1 trial protocol

Cited by 5 publications

References 58 publications

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

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

Formative evaluation of an entrepreneurial funding mechanism for training knowledge brokers in occupational therapy relevant research spaces

Establishing and sustaining authentic organizational partnerships in childhood disability research: lessons learned

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