title: The Patient Perspective on Living with Acute Myeloid Leukemia.
abstract: BACKGROUND
  Acute myeloid leukemia (AML) imposes significant burden on patients, their families, and the healthcare system. Published literature has reported many AML signs and symptoms, as well as their impact on patients. However, there are no publications on the experience of living with AML from the patient's perspective. In this study, we performed qualitative interviews with patients with AML to understand their experience.
  
  
  METHODS
  Participants were recruited from the US and Japan. All patients were screened to assess eligibility, and were divided into four subgroups (i.e., newly-diagnosed, high-intensity chemotherapy; newly-diagnosed, low-intensity chemotherapy; relapse/refractory; and post-transplant). Patients were interviewed over the phone by a trained researcher and asked about their day-to-day experience with AML. Signs/symptoms and impacts were coded, analyzed using Atlas.ti software, and reported as frequencies, with the medians of patient-reported disturbance levels (0-10) computed for each symptom and impact.
  
  
  RESULTS
  The most commonly reported sign/symptom in the US was fatigue (95.7%), followed by bruising and weakness (both 78.3%), and in Japan, nausea (94.4%), followed by fatigue and headache (both 88.9%). The most commonly reported impact in the US was a decreased ability to maintain social/familial roles (91.3%), followed by anxiety and a decreased ability to function (both 87.0%), and most commonly reported in Japan was anxiety, a decreased ability to function, and remission uncertainty (94.4%).
  
  
  CONCLUSIONS
  Although the frequency of signs/symptoms and their level of disturbance varied between the US and Japan, there was remarkable consistency in the types of signs/symptoms and impacts reported across all patients. The consistency in the experience of the disease across patients suggests that measurement of AML experience can be achieved by using the same tool for most, if not all, of these patients.
  
  
  BACKGROUND
  Astellas Pharma Inc., Northbrook, IL, USA.
authors.affiliation: University of Pittsburgh, Pittsburgh, PA USA.
authors.forename: Erin L
authors.initials: EL
authors.lastname: Tomaszewski
authors.affiliation: Quintiles, New York, NY USA.
authors.forename: Catherine E
authors.initials: CE
authors.lastname: Fickley
authors.affiliation: Quintiles, Cambridge, MA USA.
authors.forename: LeAnne
authors.initials: L
authors.lastname: Maddux
authors.affiliation: Quintiles, Cambridge, MA USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Krupnick
authors.affiliation: Astellas Pharma Global Development Inc, Northbrook, IL USA.
authors.forename: Erkut
authors.initials: E
authors.lastname: Bahceci
authors.affiliation: Quintiles, New York, NY USA.
authors.forename: Jean
authors.initials: J
authors.lastname: Paty
authors.affiliation: Astellas Pharma Europe B.V., Leiden, The Netherlands ; Dompé Farmaceutici S.p.A., Milan, Italy.
authors.forename: Floortje
authors.initials: F
authors.lastname: van Nooten
keywords: Acute myeloid leukemia; Patient experience; Patient-reported outcomes