Principal Investigator: Erik Fromme, MD
Conversations about seriously ill patients’ values and goals (serious illness conversations) frequently occur late in the illness or not at all. This can contribute to unnecessary suffering for patients and their caregivers and moral distress for clinicians, especially when care is out of alignment with patients’ priorities. Ariadne Labs and The Conversation Project have developed the What Matters to Me Workbook to help patients and their caregivers prepare for serious illness conversations. The Guide poses big questions– e.g. “what are your most important goals if your health condition worsens?” We asked patients and caregivers to complete the Workbook and discuss their answers with each other. We used survey questions and qualitative interviews to assess usefulness, keeping an eye out towards improving the workbook. Preliminary analysis of the first 16 participants (30 planned) rated the Workbook as acceptable, useful, safe, and easy-to-use. We believe the Workbook can help seriously ill patients and their caregivers clarify their goals, values, and care preferences so that they are better prepared to share them with their health care team. Clinicians could offer the Workbook to their patients beforehand to help them prepare for a serious illness conversation.
Ariadne Labs and The Conversation Project have created a patient-facing version of the Guide, the What Matters to Me Workbook, to help seriously ill patients and their caregivers prepare for a Serious Illness Conversation. This project aims to test the Workbook with a diverse sample of patients with serious illness and their caregivers to ensure it is acceptable, easy-to-use, safe, and useful.
We asked patients and caregivers to complete the Workbook and discuss their answers with each other. We used the net promoter score, investigator-authored survey questions, and qualitative analysis of in-depth interviews to assess the four dimensions of acceptability, ease-of-use, safety, and usefulness, with an eye towards improving the Workbook.
This is an interim analysis of the first 16 (30 planned) participants. Overall, ratings were very positive with a Net Promoter Score of 50 (excellent – 50% promoters, no detractors). They rated the Workbook as safe (4.96/5), acceptable (4.82/5), easy-to-use (4.43/5) and useful (4.14/5).
While these participants rated the Workbook very highly, we are seeking to increase the diversity of our sample to include more people from under-represented and marginalized communities that we would expect to be less positive about the Workbook.