What questions are most important to pancreatic cancer patients soon after diagnosis? A multicenter survey

Background Pancreatic cancer has a poor prognosis. Patients might be better able to cope with their disease when the information is discussed that they consider most important. We investigated what questions pancreatic patients consider most important to address in the first weeks after diagnosis. Methods We built a survey listing 84 questions and for each asked how important (range, 1–7) individuals who had received a certain or likely diagnosis of pancreatic cancer considered it that the question was addressed soon after diagnosis; patients who completed the survey 1 year or more after diagnosis were excluded. Mean perceived importance scores were used to rank order the questions in terms of importance. Results Forty-seven pancreatic cancer patients participated. The participants considered receiving an answer to a median of 53 (range, 21–83) questions as important (score = 6) or very important (score = 7). The number was not significantly related to gender, age, education, or time since diagnosis. For 42/84 questions, average score was ≥6.0. Topics considered most important included diagnosis, likelihood of cure, treatment options, harms and procedures, prognosis if the disease were left untreated, and quality of life. For 67/84 questions, ≥1 participants indicated that answering the question should be avoided (Md = 1 participant, range, 1–5) and for 77/84 questions that it was not applicable (Md = 3.5 participants, range, 1–30). Conclusions Pancreatic cancer patients consider a wide range of questions important to address after diagnosis, including those on sensitive topics. Doctors need to carefully dose information provision to avoid overloading patients. The findings can help to guide doctors and other information resources to provide relevant information to pancreatic cancer patients.