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Personalizing precision medicine: Patients with AML perceptions about treatment decisions
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0002-7293-3411
Univ Helsinki, Inst Mol Med Finland FIMM, Helsinki, Finland.;Univ Helsinki, Dept Hematol, Helsinki, Finland.;Fdn Finnish Canc Inst, Helsinki, Finland..
Acute Leukemia Advocates Network, Bern, Switzerland..
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2023 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 115, article id 107883Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Elsevier BV , 2023. Vol. 115, article id 107883
Keywords [en]
Acute myeloid leukemia (AML), Patient perception, Precision medicine, Patient preferences, Qualitative design, Shared decision-making
National Category
Social and Clinical Pharmacy
Identifiers
URN: urn:nbn:se:uu:diva-508856DOI: 10.1016/j.pec.2023.107883ISI: 001037458500001PubMedID: 37421687OAI: oai:DiVA.org:uu-508856DiVA, id: diva2:1787224
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Swedish Research Council, 2019-00903Available from: 2023-08-11 Created: 2023-08-11 Last updated: 2023-08-11Bibliographically approved

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Grauman, ÅsaKihlbom, Ulrik

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