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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