“It helps us say what’s important...” Developing Serious Illness Topics: A clinical visit agenda-setting tool

Skillful communication with attention to patient and care partner priorities can help people with serious illnesses. Few patient-facing agenda-setting tools exist to facilitate such communication. To develop a tool to facilitate prioritization of patient and care partner concerns during serious illness visits. Two family members of seriously ill individuals advised. We performed a literature review and developed a prototype agenda-setting tool. We modified the tool based on cognitive interviews with patients, families and clinicians. We piloted the tool with patients, care partners and clinicians to gain an initial impression of its perceived value. Interviews with eight patients, eight care partners and seven clinicians, resulted in refinements to the initial tool, including supplementation with visual cues. In the pilot test, seven clinicians used the tool with 11 patients and 12 family members. Qualitatively, patients and care partners reported the guide helped them consider and assert their priorities. Clinicians reported the tool complemented usual practice. Most participants reported no distress, disruption or confusion. Patients, care partners and clinicians appreciated centering patient priorities in serious illness visits using the agenda-setting tool. More thorough evaluation is required. The agenda-setting tool may operationalize elements of good serious illness care. •The experience of serious illness is poor and often misaligned with patient priorities.•Good communication can help improve patient experiences.•With user-centered design, we made an agenda-setting tool so patients and clinicians could set shared discussion priorities.•Called Serious Illness Topics, patients found the agenda-setting tool empowering.•Clinicians found it acceptable and helpful.