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Health-Related Quality of Life and Vulnerability among People with Myelodysplastic Syndromes: A US National Study

Journal Title: 
Blood Advances
Primary Author: 
Abel GA
Author(s): 
Abel GA, Hebert D, Lee C, Rollison DE, Gillis N, Komrokji RS, Foran JM, Liu JJ, Al Baghdadi T, Deeg HJ, Gore SD, Saber W, Wilson SH, Otterstatter M, Thompson J, Borchert C, Padron E, DeZern A, Cella D, Sekeres MA
Original Publication Date: 
Friday, May 5, 2023

Health-related quality of life (HRQoL) and vulnerability are variably affected in patients with myelodysplastic syndromes (MDS) and other cytopenic states; however, the heterogeneous composition of these diseases has limited our understanding of these domains. The NHLBI-sponsored MDS Natural History Study (NCT02775383) is a prospective cohort enrolling patients undergoing diagnostic work up for suspected MDS or MDS/myeloproliferative neoplasms (MPNs) in the setting of cytopenias. Untreated patients undergo bone marrow assessment with central histopathology review for assignment as MDS, MDS/MPN, idiopathic cytopenia of undetermined significance (ICUS), acute myeloid leukemia (AML) with <30% blasts, and "At-Risk." HRQoL data are collected at enrollment including MDS-specific (QUALMS) and general (e.g., PROMIS Fatigue) instruments. Dichotomized vulnerability is assessed with the VES-13. Baseline HRQoL scores from 449 patients with MDS (n=248), MDS/MPN (n=40), AML<30% (n=15), ICUS (n=48), or At-Risk (n=98) were similar among diagnoses. In MDS, HRQoL was worse for vulnerable participants (e.g., mean PROMIS Fatigue of 56.0 vs. 49.5; p<0.001) and those with worse prognosis (e.g., mean EQ-5D-5L of 73.4, 72.7, and 64.1 for low, intermediate, and high-risk disease; p=0.005). In vulnerable MDS participants (n=84), most had difficulty with prolonged physical activity (88%) such as walking a quarter mile (74%). These data suggest that cytopenias leading to MDS evaluation are associated with similar HRQoL-regardless of eventual diagnosis-with worse HRQoL among the vulnerable. Among those with MDS, lower-risk disease was associated with better HRQoL, but the relationship was lost among the vulnerable, showing for the first time that vulnerability trumps disease risk in affecting HRQoL.

Bone Marrow Disease(s): 
  • myelodysplastic syndromes (MDS)
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