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Table 2 Consolidated symptom conceptualization of patient experience with MDS, AML and CMML

From: A pragmatic patient-reported outcome strategy for rare disease clinical trials: application of the EORTC item library to myelodysplastic syndromes, chronic myelomonocytic leukemia, and acute myeloid leukemia

Disease- and Treatment-Related Symptoms of Higher-Risk MDS, Low-Blast Count AML, and CMML
  PT LIT CLINa
Gastrointestinal
 Nausea
 Constipation
 Vomiting  
 Diarrhea  
 Distension   
 Feeling full after eating little food   
 Bloating   
 Loss of appetite   
Fatigue
 Weakness
 Easily fatigued
 Tiredness
 Low Energy
 Exhausted   
 Heaviness (arms/legs)  
 Sluggish
 Worn out  
Pain
 Bone pain  
 Muscle pain/soreness
 Headache
 Cramps   
 Chemical burn   
Bleeding
 Bleeding
 Bruising  
 Petechiae   
Cognitive function
 Difficulty concentrating
 Memory loss   
 Confusion   
Sensory
 Dry throat/mouth  
 Tastelessness    
 Taste changes   
 Dry lips    
 Ringing in the ears    
 Numbness  
 Cold hands/feet    
 Feeling cold   
 Itchy skin   
Other
 Shortness of breath
 Rash  
 Infection (e.g., cough, chest congestion, sputum production, dysuria)  
 Dizziness  
 Lightheaded   
 Dyspnea on exertion
 High fever/chills
 Paleness  
 Weight gain/loss  
 Hair loss  
 Vertigo  
 Anorexia  
 Cardiac issues  
 Eyes tearing   
 Skin peeling   
 Skin tearing   
 Swelling (lymph nodes)   
 Dysphagia (difficulty swallowing)    
  1. indicates concept explicitly endorsed by referenced source
  2. Abbreviations: PT Patient-reported concept, LIT Literature-based concept, CLIN Clinician-supported concept
  3. aClinicians reviewed and endorsed all literature-based concepts in this framework