Research has shown that minority and medically underserved patients are less likely to be actively involved in clinical encounters and tend to ask fewer questions [4246]. Active involvement allows patients to share their concerns and priorities, clarify uncertainties, and obtain new information; thus, this involvement is critical for shared decision making and patient-centered care. In the context of ES for minor patients with suspected genetic diseases, it is also important that patients/parents share information about symptoms that can guide the interpretation of variants. Achieving these objectives can be challenging in minority or medically underserved patients/parents, who may prefer a less active role in decision making [4749]. However, providing tools to increase health knowledge and encourage participation in informed choice and collaborative decision making, has been shown to improve decision self-efficacy, preference for collaborative decision making, and reduced decisional conflict [50, 51].

One tool to promote active involvement in clinical consultations is the provision of a carefully constructed question prompt list (QPL), a communication aid that provides patients with a list of questions to ask their physicians [52]. Patients who use QPLs ask more questions and elicit more information in clinical consultations [53], especially when physicians endorse the use of the QPL and encourage question asking [54]. Evidence suggests that QPLs may be especially important for promoting active involvement of minority and medically underserved patients [4246].

The study was designed to evaluate the efficacy of a PVP intervention consisting of two packets containing educational booklets and QPLs mailed at two different times to participants before study-associated clinical interactions that are designed to maximize their engagement in clinic activities, informed decision making about genetic testing, and understanding of genetic results. The first PVP packet will focus on helping patients understand what happens in a specialty clinic consultation (e.g., what questions the physician may ask, patients’ role in asking questions and sharing information) and concepts such as genetic causes of health conditions, the process of diagnostic testing, and implications of finding a genetic cause of a health condition. The second packet will focus on different types of results that may be returned from a genetic evaluation, how results may affect the clinical guidance offered by a provider, next steps (e.g., further testing, clinical appointments, family studies), and when/how to talk about the results with family members. Parent and provider surveys and audio recordings of clinical encounters will be used to measure the impact of PVP on the primary outcomes of engagement of participants in the clinical interaction and their view of the interaction as patient-centered.

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