PCORI Science of Engagement: Developing a Multi-Dimensional Measure of Adolescent Engagement in Research


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dc.contributorPatient-Centered Outcomes Research Institute
dc.contributor.authorChristakis, Dimitri
dc.contributor.otherSeattle Children's Hospital
dc.date.accessioned2024-10-25T21:12:01Z
dc.descriptionAdolescent engagement in research is foundational to the patient-centered care of adolescents. However, there is limited information about the processes through which high-quality engagement occurs, and no valid and reliable way of measuring engagement quality in this important and developmentally unique patient population. Measuring engagement quality from the perspective of adolescents is important for quantifying the patient-reported impact of engagement strategies. However, at present, there are no valid and reliable measures of this concept. Developing a measure of engagement that is relevant, trustworthy and useful for all adolescents requires both a developmental framework, and intentionality and reflexivity about whose perspectives are centered in the development process. This study addresses this gap in the engagement literature, working in partnership with the PEDSnet Youth Advisory Council (YAC). The PEDSnet YAC is a racially, ethnically and socioeconomically diverse group of 20 adolescents who are current or former patients at a pediatric academic medical center that is a member of PEDSnet, a pediatrics-focused clinical research network of PCORnet®. #### Study Aims 1. Refine a conceptual model of adolescent engagement in research using concept-mapping methods that elevate and synthesize adolescent perspectives. 2. Develop a measure of adolescent engagement that reflects the conceptual model from aim 1. 3. Test the reliability and validity of the newly developed measure. Concept mapping and survey data is collected from a diverse sample of adolescents who are currently engaged in research at a PEDSnet academic medical center site. Completing the aims will produce a measure that is acceptable to a diverse group of adolescents, that has acceptable psychometric properties, and that has robust evidence about its reliability and validity. This measure will be well positioned to assess engagement quality of adolescents engaged in research in healthcare settings.
dc.description.abstractStudy to develop a measure of engagement that is relevant, trustworthy and useful for all adolescents.
dc.identifier.urihttps://hdl.handle.net/20.500.14642/843
dc.language.isoen
dc.publisherPEDSnet
dc.rightsa CC-BY 4.0 Attribution license.
dc.rights.urihttps://creativecommons.org/licenses/by-sa/4.0/
dc.subjectPEDSnet Data Source
dc.subjectPCORI-Funded Research
dc.subject.meshAdolescent Health
dc.subject.meshData Collection
dc.subject.meshSurveys and Questionnaires
dc.subject.meshHealth Care Evaluation Mechanisms
dc.subject.meshPopulation Characteristics
dc.titlePCORI Science of Engagement: Developing a Multi-Dimensional Measure of Adolescent Engagement in Research
dspace.entity.typeStudy
local.admin.noteStudy PM: Colleen, Study Analysts: Seattle https://atlassian.chop.edu/jira/browse/PMO-857
local.contributor.siteLeadSeattle Children's Hospital
local.contributor.siteSponsorSeattle Children's Hospital
local.contributor.sitesCincinnati Children's Hospital Medical Center
local.contributor.sitesChildren's Hospital of Philadelphia
local.contributor.sitesChildren's National Hospital
local.contributor.sitesAnn & Robert H. Lurie Children's Hospital of Chicago
local.contributor.sitesNationwide Children's Hospital
local.contributor.sitesSeattle Children's Hospital
local.contributor.sitesNemours Children's Health
local.contributor.sitesTexas Children's Hospital
local.identifier.pedsnetid2024.CHRD.PCORI.SCH
project.endDatePresent
project.startDate2024
relation.isOrgUnitOfStudya118440c-013c-4d44-b7ce-19a9b1441304
relation.isOrgUnitOfStudy.latestForDiscovery405a8c92-423e-4a76-b554-55c63376f603

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