Abstract
INTRODUCTION: Parents of children with cancer describe interactions with clinicians as emotionally distressing. Patient engagement in treatment discussions decreases decisional conflict and improves decision quality which may limit such distress. We have shown that parents prefer to engage surgeons by asking questions, but parents may not know what to ask. Question Prompt Lists (QPLs), structured lists of questions designed to help patients ask important questions, have not been studied in pediatric surgery. We developed a QPL designed to empower parents to ask meaningful questions during pediatric surgical oncology discussions. We conducted a mixed methods analysis to assess the acceptability, appropriateness, and feasibility of using the QPL. METHODS: Key stakeholders at an academic children's hospital participated in focus groups to discuss the QPL. Focus groups were recorded and transcribed. Participants were surveyed regarding QPL acceptability, appropriateness, and feasibility. Thematic content analysis of transcripts was performed. RESULTS: Four parents, five nurses, five nurse practitioners, five oncologists, and four surgeons participated. Seven key themes were identified: (1) QPL as a tool of empowerment; (2) stick to the surgical details; (3) QPLs can impact discussion quality; (4) time consuming, but not overly disruptive; (5) parental emotion may impact QPL use; (6) provide QPLs prior to surgical consultation in both print and digital formats; and (7) expansion of QPLs to other disciplines. Over 70% of participants agreed that the QPL was acceptable, appropriate, and feasible. CONCLUSIONS: Our novel QPL is acceptable, appropriate, and feasible to use with parents of pediatric surgical oncology patients.