Quality of life measurement in patients with transfusion‐dependent myelodysplastic syndromes

Abstract

The myelodysplastic syndromes (MDS) are clonal disorders characterized by dysplasia in at least two myeloid cell lines. Fatigue is one of the most significant symptoms. MDS patients are treated with blood transfusions to improve their health-related quality of life (HRQoL). A cross-sectional pilot study was performed for psychometric evaluation of three internationally established HRQoL measures in MDS patients, and for investigation of the association between the severity of chronic anaemia and HRQoL. Fifty consecutive MDS patients completed the Short Form 36, the Multidimensional Fatigue Inventory and the EuroQoL-5D Visual Analogue Scale. Hb level was measured during the same visit. Psychometric analysis focused on feasibility, construct validity and reliability. The questionnaires showed a high feasibility, reliability and validity. MDS patients had worse HRQoL scores than the age- and sex-matched general population. We found a positive correlation between haemoglobin (Hb) level and HRQoL. This study provides insights into the suitability of established HRQoL measures for the evaluation of interventions in MDS patients. Hb value and HRQoL are complementary variables for evaluation of the severity of chronic anaemia in patients with MDS.

Red blood cell transfusions and iron overload in the treatment of patients with myelodysplastic syndromes

“…Fatigue is one of the principal symptoms of anemia, and patients suffer from lethargy, decreased mental alertness, physical weakness, and poor concentration. 28 The mainstay for treatment of MDS has been supportive therapy with RBC transfusions, which can mitigate the symptoms of anemia, particularly fatigue, as well as improve patients' healthrelated quality of life (HRQoL) and help maintain independence. 29 Chronic transfusions increase hemoglobin (Hb) levels and enable adequate tissue oxygenation, which has a positive correlation with HRQoL 28 and improves the physical and intellectual activity of patients.…”

Should blood transfusion be individualised? We are not sure

“…In addition to this, anaemia persists in many patients after critical illness [13] and may contribute to the post-ICU syndrome that we are only starting to understand. There is a strong association between transfusion and quality of life in chronic anaemia syndromes [14]; the same might be true in recovering critically ill patients.…”

Development and validation of QOL-E© instrument for the assessment of health-related quality of life in myelodysplastic syndromes

“…Complications and symptoms of myelodysplastic syndromes and the most common forms of treatment are known to affect the lives and lifestyles of individuals with MDS [5][6][7][8][9][10]. Yet, formal assessment of HRQoL in this population has not routinely been undertaken in observational or clinical trials [10].…”

“…The main treatment for myelodysplastic syndromes is red blood cell transfusion to attenuate the most important clinical features of chronic anaemia, which manifest as fatigue and frequent infections [5][6][7]. Disease burden and treatments affect HRQoL and highlight the potential of patient-reported outcomes in supporting clinical and therapeutic decisions [5][6][7][8][9][10].…”