Question prompt lists and caregiver question asking in pediatric specialty appointments: A randomized controlled trial.

Objective: Question prompt lists (QPLs) have been effective at increasing patient involvement and question asking in medical appointments, which is critical for shared decision making. We investigated whether pre-visit preparation (PVP), including a QPL, would increase question asking among caregivers of pediatric patients with undiagnosed, suspected genetic conditions.

Methods: Caregivers were randomized to receive the PVP before their appointment (n = 59) or not (control, n = 53).

Engaging community stakeholders in research on best practices for clinical genomic sequencing.

Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study. A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed.