Personalizing precision medicine: Patients with AML perceptions about treatment decisions

Background: This study aims to explore patients’ with acute myeloid leukemia perceptions about precision medicine and their preferences for involvement in this new area of shared decision-making. Methods: Individual semi-structured interviews were conducted in Finland, Italy and Germany (n = 16). The study population included patients aged 24–79 years. Interviews were analyzed with thematic content analysis. Results: Patient's perceived lack of knowledge as a barrier for their involvement in decision-making. Treatment decisions were often made rapidly based on the patient's intuition and trust for the physician rather than on information, in situations that decrease the patient's decision capacity. The patients emphasized that they are in a desperate situation that makes them willing to accept treatment with low probabilities of being cured. Conclusions: The study raised important issues regarding patients’ understanding of precision medicine and challenges concerning how to involve patients in medical decision-making. Although technical advances were viewed positively, the role of the physician as an expert and person-of-trust cannot be replaced. Practice implications: Regardless of patients’ preferences for involvement in decision-making, information plays a crucial role for patients’ perceived involvement in their care. The concepts related to precision medicine are complex and will imply challenges to patient education.