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QOL- E
In 2002, the QOL-E V.2 questionnaire was then tested in 96 patients in Reggio Calabria and Catania (both in Southern Italy). Age ranged from 35.6 to 90.2 years, mean value 72.3 (S.D. 10.7). Eighty-two patients had low-Int-1 risk and 14 had Int-2 and high-risk MDS according to IPSS. Hemoglobin (Hb) levels ranged from 5.8 to 16.4 g/dl, mean value 10.3 (S.D. 2.4) g/dl. Twenty-two patients had normal Hb levels, 23 had mild anemia, 20 had moderate and 31 had severe anemia on supportive care with one to five transfusions per month.
All QOL-E dimensions demonstrated good internal consistency according to the standardized Cronbach reliability coefficient alpha: 0.80 for QoL-FIS, 0.74 for QoL-FUN, 0.70 for QoL-SOC, 0.80 for QoL-SEX, 0.74 for QoL-FAT and 0.74 for QoL-MDSS.


In general, one-third of patients declared that their health is acceptable and another third considered their health as poor. All median subscale scores were low (less than 60% of the highest possible score). Most patients described various grades of physical activity as very difficult to perform. Most frequently, patients reported a little or a lot of fatigue but only five patients had extreme fatigue that interfered with daily activities. Almost all patients were disturbed by shortness of breath when climbing stairs and about 10% were bedridden most of the day because of MDS. Most transfusion-dependent patients were disturbed by their dependence on transfusions, hospitals, doctors and nurses, while less than 50% of patients not requiring supportive care felt disturbed by their dependence on hospitals and staff.

 

In a multifactorial regression model that included the number of monthly transfusions, Hb levels, age, sex and disease duration, Hb levels independently predicted fatigue (r = 0.30,P = 0.003). Social well-being was independently predicted by the number of monthly transfusions (r = -0.35, P = 0.001). Both Hb levels and transfusion-dependence were independently correlated with physical (r = 0.26, P = 0.006, r = -0.18, P = 0.05, respectively), QoL-MDSS (r = 0.20, P = 0.05 and r = -0.32, P = 0.002), treatment outcome index (r = 0.21, P = 0.02 and r = -0.25, P = 0.007) and total QoL-E scores (r = 0.23, P = 0.01 and r = -0.21, P = 0.03). 


Retesting was performed after 2 months in 19 patients not receiving pharmacological treatment. Changes are shown in table 1.


 


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