The understanding and management of cancer-related symptoms is a primary role for oncology nurses. No patient-reported outcome (PRO) measures currently exist for those with acute myeloid leukemia (AML) or myelodysplastic syndrome (MDS). A recent descriptive, cross-sectional study sought to develop a short, valid, reliable PRO measure of symptom burden for patients with AML and MDS to determine the validity for practice and research. The study was funded by Bristol-Myers Squibb.

Loretta A. Williams, PhD, RN, and colleagues from the University of Texas M.D. Anderson Cancer Center in Houston, presented the findings during a poster session at the ONS 41st Annual Congress in San Antonio, TX. The poster was titled “A Patient-Reported Outcome Measure for Symptoms and Symptom Burden of Acute Myeloid Leukemia (AML) and Myelodysplastic Syndrome (MDS).” 

The study was conducted at a comprehensive cancer center in the southern United States between 2012 and 2015. Patients rated symptom burden on the provisional version of the M.D. Anderson Symptom Inventory (MDASI)−AML/MDS, a multisymptom PRO measure of symptom burden in patients with cancer, and then completed the assessment again one to two days later. The assessment included 13 core cancer symptoms, 6 core interference items, and 6 proposed AML/MDS-specific symptoms identified from qualitative interviews of patients with AML and MDS and judged as relevant by an expert panel of physicians and nurses.

A total of 249 patients with AML (n = 152) or MDS (n = 97) were included in the study. Patients with MDS were significantly older and had been diagnosed longer than those with AML, whereas patients with AML reported significantly worse quality of life.

The five most severe symptoms for inpatients with AML were

  • Fatigue
  • Disturbed sleep
  • Dry mouth
  • Muscle weakness
  • Lack of appetite.

The five most severe symptoms for outpatients with AML were

  • Fatigue
  • Drowsiness
  • Dry mouth
  • Memory problems
  • Distress.

The five most severe symptoms for patients with MDS were

  • Fatigue
  • Muscle weakness
  • Drowsiness
  • Disturbed sleep
  • Shortness of breath.

Inpatients with AML reported symptoms as significantly more severe than outpatients with AML and patients with MDS, whereas outpatients with AML and those with MDS differed only on the severity of nausea symptoms.

A cluster analysis suggested four symptom clusters of sickness, fatigue, neurologic, and gastrointestinal symptoms.

The MDASI−AML/MDS measure appeared to demonstrate moderate correlations with global patient quality of life scores and Functional Assessment of Cancer Therapy−Leukemia subscale scores. “The MDASI−AML/MDS has good internal reliability, test-retest reliability, and has proven content and concurrent validity,” the authors wrote.

The researchers noted that MDASI−AML/MDS can be used by oncology nurses in clinical practice and in research to develop evidence for effective symptom management interventions in this patient population, where evidence is lacking.

“A better understanding of symptoms across disease and treatment trajectories can assist oncology nurses in providing effective education to patients and family caregivers and improving adherence to treatment regimens,” the authors concluded.

Williams, L.A., Garcia-Gonzalez, A., Cortes, J.E., Garcia-Manero, G., & Mendoza, T.R. (2016). A patient-reported outcome measure for symptoms and symptom burden of acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS). Poster presented at the ONS 41st Annual Congress, San Antonio, TX, April 28–May 1, 2016.

Add new comment

About text formats

Plain text

  • No HTML tags allowed.
  • Lines and paragraphs break automatically.
  • Web page addresses and email addresses turn into links automatically.