Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling

Psychooncology. 2021 Jul;30(7):1104-1111. doi: 10.1002/pon.5652. Epub 2021 Feb 27.


Context: Although patients with acute myeloid leukemia (AML) experience significant toxicities and poor outcomes, few studies have quantified patients' experience.

Methods: A community-centered approach was used to develop an AML-specific best-worst scaling (BWS) instrument involving 13 items in four domains (psychological, physical, decision-making, and treatment delivery) to quantify patient worry. A survey of patients and caregivers was conducted using the instrument. Data were analyzed using conditional logistic regression.

Results: The survey was completed by 832 patients and 237 caregivers. Patients were predominantly white (88%), married/partnered (72%), and in remission (95%). The median age was 55 years (range: 19-87). Median time since diagnosis was 8 years (range: 1-40). Patients worried most about "the possibility of dying from AML" (BWS score = 15.5, confidence interval [CI] [14.2-16.7]) and "long-term side effects of treatments" (14.0, CI [12.9-15.2]). Patients found these items more than twice as worrisome as all items within the domains of care delivery and decision-making. Patients were least worried about "communicating openly with doctors" (2.50, CI [1.97-3.04]) and "having access to the best medical care" (3.90, CI [3.28-4.61]). Caregiver reports were highly correlated to patients' (Spearman's ρ = 0.89) though noted significantly more worry about the possibility of dying and spending time in the hospital.

Conclusion: This large convenience sample demonstrates that AML patients have two principal worries: dying from their disease and suffering long-term side effects from treatment. To better foster patient-centered care, therapeutic decision-making and drug development should reflect the importance of both potential outcomes. Further work should explore interventions to address these worries.

Keywords: Acute; Anxiety; Caregivers/psychology; Decision Making; Drug Development/*methods; Leukemia; Logistic Models; Myeloid; Patient Preference; Patient-Centered Care; Psycho-oncology; Risk Assessment.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Anxiety
  • Caregivers*
  • Humans
  • Leukemia, Myeloid, Acute* / therapy
  • Middle Aged
  • Patient Outcome Assessment
  • Surveys and Questionnaires