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- W4372333359 abstract "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." @default.
- W4372333359 created "2023-05-07" @default.
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- W4372333359 date "2023-05-05" @default.
- W4372333359 modified "2023-10-02" @default.
- W4372333359 title "Health-Related Quality of Life and Vulnerability among People with Myelodysplastic Syndromes: A US National Study" @default.
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- W4372333359 doi "https://doi.org/10.1182/bloodadvances.2022009000" @default.
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