The Quality of Life in Myelodysplasia Scale (QUALMS)
About the QUALMS
The Quality of Life in Myelodysplasia Scale, or QUALMS, was developed after a series of focus groups with patients with myelodysplastic syndromes (MDS), their caregivers and providers, and validated by an international group of MDS researchers. The QUALMS consists of 38 items, and takes less than 10 minutes to complete. Scored on a scale of 0 to 100 (higher score is correlated with better MDS-specific QOL), the QUALMS recently underwent validation in United States, Canada, and Italy (n=255), where patients were assessed twice with the instrument and several others. The measure was internally consistent (α=0.92) and moderately correlated with both the EORTC QLQ-C30 and FACT-An scales. Moreover, patients with hemoglobin ≤ 8 g/dL scored lower than those with hemoglobin >10 g/dL (61.8 versus 71.1, p<0.001), and transfusion-dependent patients scored lower than transfusion-independent patients (62.4 versus 69.7; p<0.01). There was good overall test-retest reliability among those with stable hemoglobin (r=0.81), and significant changes for patients hospitalized or with infections between administrations (both p<0.01). Principal components analysis revealed “physical burden,” “benefit-finding,” and “emotional burden” subscales. Additional validation efforts are ongoing, both to determine the utility of the measure and subscales for clinical trials and for clinical decision-making.