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

Daniel R. Richardson, Allison H. Oakes, Norah L. Crossnohere, Gary Rathsmill, Crystal Reinhart, Bernadette O’Donoghue, John F.P. Bridges

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish (US)
Pages (from-to)1104-1111
Number of pages8
Issue number7
StatePublished - Jul 2021


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

ASJC Scopus subject areas

  • Experimental and Cognitive Psychology
  • Oncology
  • Psychiatry and Mental health


Dive into the research topics of 'Prioritizing the worries of AML patients: Quantifying patient experience using best–worst scaling'. Together they form a unique fingerprint.

Cite this