Adolescent 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 will address 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®. With the overarching objective of developing a valid and reliable measure of the process of adolescent engagement in research, the following specific aims will be addressed:
- Refine a conceptual model of adolescent engagement in research using concept-mapping methods that elevate and synthesize adolescent perspectives.
- Develop a measure of adolescent engagement that reflects the conceptual model from aim 1.
- Test the reliability and validity of the newly developed measure.
Concept mapping and survey data will be collected from a diverse sample of adolescents who are currently engaged in research at a PEDSnet academic medical center site. Completing these 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.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.