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Table 3 Consolidated impact 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

Health-Related Quality of Life Impacts of Higher-Risk MDS, Low-Blast Count AML, and CMML
 Walking (e.g., problems walking long distances, walking in certain places, walking on unleveled ground, walking on stairs, unsteady gait)
 Stay in bed/chair   
 Inability to move quickly (move slowly)  
 Loss of coordination   
 Rising from sitting   
 Bending down   
 Lack of balance   
 Feeling sleepy
 Waking from sleep  
 Sleep disturbances  
 Inability to carry out jobs
 Time lost from work  
 Loss of employment  
 Treatment costs  
 Recreational activities (e.g., bowling, golfing, sporting events, fishing, bird watching)
 Limited air travel  
 Watching television    
 Watching movies/theater   
 Taking extending vacations  
 Arts and crafts   
 Board games   
Diet and nutrition
 Avoid dining out   
 Avoid certain foods    
Psychological Impact
 Treatment burden   
 Low motivation  
 Feeling discouraged    
 Increased sense of awareness  
 Loss of confidence   
 Feeling overwhelmed    
 Strengthening pre-existing faith    
 New-found appreciation    
 Struggle to find meaning in one’s illness    
 Feeling uncertainty    
Social limitation
 Wearing protective masks  
 Exposure to/ interaction with children/ grandchildren
 Sex life   
 Attendance at parties/celebrations   
 Restricting visits from sick people
 Attending church   
 Inability to maintain roles  
Activities and daily living
 Household chores
 Caring for others  
 Need supervision bathing   
 Getting dressed   
 Traveling to hospital    
  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