Personal narratives to support learning about lung transplant for people with cystic fibrosis.

Only 25 adults participated, and there was no control group, so change could be due to time, attention, or repeated testing. The sample was mostly White, college-educated, married, and privately insured, so the results may not apply to other groups. Knowledge and preparedness were measured immediately after the visit, not after days, weeks, or actual transplant decisions. The Decisional Conflict Scale analysis used 24 participants because one did not complete the baseline questionnaire. In the FEV 1 below 50% predicted subgroup, the mean decisional conflict change had p=0.06, so that subgroup result was less clear than the overall result. Knowledge was measured with only four yes/no questions, and many participants already scored high, which may limit room for improvement. The intervention included choosing a story and reading Will's story, so the study cannot show which part of the website mattered. Some participants said stories did not resonate, and the authors noted stories could heighten decisional conflict for some people.

Kathleen Ramos reported financial support from the National Institutes of Health and the Cystic Fibrosis Foundation, and a relationship with Vertex Pharmaceuticals including speaking and lecture fees and travel reimbursement. The other authors declared no known competing financial interests or personal relationships.

Do not conclude that Stories are proven to improve long-term transplant decisions. The study was a small before and after pilot with no control group, measured knowledge immediately after reading, and the FEV 1 below 50% predicted subgroup had a decisional conflict p-value of 0.06.