title: Patient experiences of acute myeloid leukemia: A qualitative study about diagnosis, illness understanding, and treatment decision-making.
abstract: BACKGROUND
  Patients with acute myeloid leukemia (AML) face a unique, difficult situation characterized by sudden changes in health, complex information, and pressure to make quick treatment decisions amid sizeable tradeoffs. Yet, little is known about patients' experiences with AML. We used qualitative methods to learn about their experiences with diagnosis and treatment decision-making to identify areas for improvement.
  
  
  METHODS
  We recruited hospitalized patients with AML to participate in semi-structured qualitative interviews about their experiences being diagnosed with AML, receiving information, and making a treatment decision. Interviews were conducted during their hospitalization for induction chemotherapy. We analyzed data by using a constant comparison approach.
  
  
  RESULTS
  Thirty-two patients completed an interview. Four main themes emerged: (a) shock and suddenness, (b) difficulty processing information, (c) poor communication, and (d) uncertainty. Patients frequently described their diagnosis as shocking. They also felt that the amount of information was too great and too difficult to process, which negatively impacted their understanding. Patients frequently described a lack of emotional support from clinicians and described uncertainty about their prognosis, the number and nature of available treatments, and what to expect from treatment.
  
  
  CONCLUSIONS
  Acute myeloid leukemia poses a sudden, emotionally challenging, information-laden situation, where little time is available to make important decisions. This results in difficulty processing information and is sometimes complicated by a lack of emotive communication from clinicians. Results indicate a need for targeted interventions to improve AML patients' understanding of illness and treatment options and to address their traumatic experiences around diagnosis.
authors.affiliation: Duke Cancer Institute, Durham, NC, USA.|Division of Hematologic Malignancies and Cellular Therapy, Department of Medicine, Duke University School of Medicine, Durham, NC, USA.
authors.forename: Thomas W
authors.initials: TW
authors.lastname: LeBlanc
authors.affiliation: Duke Cancer Institute, Durham, NC, USA.
authors.forename: Laura J
authors.initials: LJ
authors.lastname: Fish
authors.affiliation: Duke Clinical Research Institute, Durham, NC, USA.
authors.forename: Catherine T
authors.initials: CT
authors.lastname: Bloom
authors.affiliation: Massachusetts General Hospital, Boston, MA, USA.
authors.forename: Areej
authors.initials: A
authors.lastname: El-Jawahri
authors.affiliation: Duke Cancer Institute, Durham, NC, USA.
authors.forename: Debra M
authors.initials: DM
authors.lastname: Davis
authors.affiliation: Duke Cancer Institute, Durham, NC, USA.
authors.forename: Susan C
authors.initials: SC
authors.lastname: Locke
authors.affiliation: Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, NC, USA.
authors.forename: Karen E
authors.initials: KE
authors.lastname: Steinhauser
authors.affiliation: Duke Cancer Institute, Durham, NC, USA.
authors.forename: Kathryn I
authors.initials: KI
authors.lastname: Pollak
mesh_terms: D000328:Adult; D000368:Aged; D003657:Decision Making; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D015470:Leukemia, Myeloid, Acute / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D035501:Uncertainty
keywords: acute myeloid leukemia; cancer; oncology; palliative care; qualitative research; supportive care