Objective: Patient report of symptom burden from acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) is scarce. Symptom burden is the combined impact of symptoms from disease and treatment on daily functioning. We are developing a measure of symptom burden in AML and MDS. The purpose of this interim analysis is to compare the symptom burden of patients with AML and MDS.

Methods: Patients with AML or MDS rated the 13 core symptom items, 6 proposed AML/MDS-specific symptom items, and 6 interference items of the MD Anderson Symptom Inventory on a 0-10 scale (0 = not present or no interference; 10 = as bad as can be imagined or complete interference). Patient clinical and demographic information was collected from medical records. The symptom burden of AML/MDS was determined and compared using descriptive statistics and t-tests.

Results: Mean ages of the 45 AML patients and 48 MDS patients were 62.4 (standard deviation [SD] = 11.3) and 68.5 years (SD = 9.2; p = 0.005), respectively; 61% and 60% (p = not significant), respectively, were male; 76% and 92% (p = 0.043), respectively, were white. The composite mean severity score of the core symptom items was 2.75 (SD = 1.58) and 1.84 (SD = 1.52; p = 0.006), the composite mean of the AML/MDS specific items was 2.51 (SD = 1.87) and 1.49 (1.60; p = 0.005), and the composite mean score of the interference items was 3.96 (SD = 2.72) and 2.81 (SD = 2.69; p = 0.042) for the AML and MDS patients, respectively. The means, ranks, significance of difference in ratings, and prevalence of the individual symptom and interference items for the AML and MDS patients are in Table 1. Cronbach α for all symptom items was 0.94 and for all interference items was 0.92.

Conclusions: Patients with AML and MDS experience similar symptoms. However, patients with AML report significantly more severe pain, fatigue, nausea, lack of appetite, dry mouth, vomiting, fever, and headache than patients with MDS. Only prevalence of shortness of breath and diarrhea was higher in MDS patients, but there was no difference in reported mean severity of these symptoms. Except for general activity, rating of symptom interference with daily activities is similar for the two groups. Lack of recognition of symptoms experienced by patients with AML and MDS can lead to inadequate management of symptoms, interfere with patients' ability to function and enjoy life, and impact the tolerability of and adherence to treatment regimens. Validation of this measure of symptom burden for patients with AML and MDS to allow more accurate and consistent monitoring of symptoms by clinicians and in clinical research is ongoing.

Table 1.

Individual MDASI Item Means and Significance for AML and MDS Patients

Core Symptom Items
NMeanSDp-valueRankPrevalence (%)
Pain MDS 48 2.00 2.760 0.009* 58 
AML 45 3.69 3.309  69 
Fatigue MDS 47 3.45 2.947 0.037* 79 
AML 45 4.69 2.653  91 
Nausea MDS 48 .50 1.368 <0.001* 17 23 
AML 45 2.67 3.233  58 
Disturbed Sleep MDS 48 2.38 3.050 0.124 56 
AML 45 3.38 3.172  71 
Distress MDS 48 2.19 2.498 0.476 63 
AML 45 2.56 2.455  10 71 
Shortness of Breath MDS 48 2.15 2.518 0.543 65 
AML 45 1.84 2.215  17 53 
Problems Remembering MDS 48 1.94 2.025 0.663 10 71 
AML 45 2.13 2.292  14 71 
Lack of Appetite MDS 48 1.33 2.035 <0.001* 13 48 
AML 45 3.73 3.460  76 
Drowsiness MDS 48 2.85 3.032 0.187 71 
AML 45 3.69 3.021  78 
Dry Mouth MDS 48 2.31 2.746 0.045* 69 
AML 44 3.59 3.223  73 
Sadness MDS 48 1.83 2.127 0.394 11 60 
AML 45 2.22 2.255  11 73 
Vomiting MDS 48 0.00 0.000 0.009* 19 
AML 45 .73 1.912  19 22 
Numbness or Tingling MDS 48 1.08 2.071 .712 15 33 
AML 45 .93 1.814  18 33 
AML/MDS-Specific Symptom Items  
Malaise MDS 48 2.46 2.843 0.133 65 
AML 46 3.35 2.838  78 
Fever MDS 48 .50 1.544 0.006* 18 19 
AML 46 1.91 3.002  16 41 
Headache MDS 48 .81 1.483 0.011* 16 35 
AML 46 2.22 3.339  11 44 
Diarrhea MDS 48 1.56 2.567 0.512 12 48 
AML 46 1.96 3.211  15 41 
Muscle Weakness MDS 48 2.35 2.899 0.063 60 
AML 46 3.43 2.664  83 
Rash or Skin Problems MDS 48 1.23 2.469 0.065 14 38 
AML 46 2.22 2.666  11 59 
Interference Items  
General Activity MDS 46 3.20 3.449 0.031* 65 
AML 46 4.83 3.696  80 
Mood MDS 48 2.38 2.687 0.066 65 
AML 44 3.48 2.984  80 
Work MDS 48 3.54 3.638 0.086 67 
AML 46 4.87 3.781  78 
Relations with Others MDS 48 1.69 2.683 0.154 48 
AML 46 2.54 3.082  52 
Walking MDS 48 2.88 3.112 0.275 71 
AML 46 3.57 2.971  78 
Enjoyment of Life MDS 48 3.21 3.261 0.055 73 
AML 46 4.54 3.397  80 
Core Symptom Items
NMeanSDp-valueRankPrevalence (%)
Pain MDS 48 2.00 2.760 0.009* 58 
AML 45 3.69 3.309  69 
Fatigue MDS 47 3.45 2.947 0.037* 79 
AML 45 4.69 2.653  91 
Nausea MDS 48 .50 1.368 <0.001* 17 23 
AML 45 2.67 3.233  58 
Disturbed Sleep MDS 48 2.38 3.050 0.124 56 
AML 45 3.38 3.172  71 
Distress MDS 48 2.19 2.498 0.476 63 
AML 45 2.56 2.455  10 71 
Shortness of Breath MDS 48 2.15 2.518 0.543 65 
AML 45 1.84 2.215  17 53 
Problems Remembering MDS 48 1.94 2.025 0.663 10 71 
AML 45 2.13 2.292  14 71 
Lack of Appetite MDS 48 1.33 2.035 <0.001* 13 48 
AML 45 3.73 3.460  76 
Drowsiness MDS 48 2.85 3.032 0.187 71 
AML 45 3.69 3.021  78 
Dry Mouth MDS 48 2.31 2.746 0.045* 69 
AML 44 3.59 3.223  73 
Sadness MDS 48 1.83 2.127 0.394 11 60 
AML 45 2.22 2.255  11 73 
Vomiting MDS 48 0.00 0.000 0.009* 19 
AML 45 .73 1.912  19 22 
Numbness or Tingling MDS 48 1.08 2.071 .712 15 33 
AML 45 .93 1.814  18 33 
AML/MDS-Specific Symptom Items  
Malaise MDS 48 2.46 2.843 0.133 65 
AML 46 3.35 2.838  78 
Fever MDS 48 .50 1.544 0.006* 18 19 
AML 46 1.91 3.002  16 41 
Headache MDS 48 .81 1.483 0.011* 16 35 
AML 46 2.22 3.339  11 44 
Diarrhea MDS 48 1.56 2.567 0.512 12 48 
AML 46 1.96 3.211  15 41 
Muscle Weakness MDS 48 2.35 2.899 0.063 60 
AML 46 3.43 2.664  83 
Rash or Skin Problems MDS 48 1.23 2.469 0.065 14 38 
AML 46 2.22 2.666  11 59 
Interference Items  
General Activity MDS 46 3.20 3.449 0.031* 65 
AML 46 4.83 3.696  80 
Mood MDS 48 2.38 2.687 0.066 65 
AML 44 3.48 2.984  80 
Work MDS 48 3.54 3.638 0.086 67 
AML 46 4.87 3.781  78 
Relations with Others MDS 48 1.69 2.683 0.154 48 
AML 46 2.54 3.082  52 
Walking MDS 48 2.88 3.112 0.275 71 
AML 46 3.57 2.971  78 
Enjoyment of Life MDS 48 3.21 3.261 0.055 73 
AML 46 4.54 3.397  80 

* Significant at p < 0.05.

Disclosures

No relevant conflicts of interest to declare.

Author notes

*

Asterisk with author names denotes non-ASH members.

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