Abstract
Myelodysplastic syndromes (MDS) are in the majority of cases characterized by anemia. Both anemia and MDS per se may directly contribute to impairments in health-related quality of life (HRQoL). In this study, we aimed to investigate the anemia-independent impact of MDS on HRQoL. We evaluated participants (≥ 50 years) from the large population-based Lifelines cohort (N = 44,694, mean age 59.0 ± 7.4 years, 43.6% male) and the European MDS Registry (EUMDS) (N = 1538, mean age 73.4 ± 9.0 years, 63.0% male), which comprises a cohort of lower-risk MDS patients. To enable comparison concerning HRQoL, SF-36 scores measured in Lifelines were converted to EQ-5D-3L index (range 0–1) and dimension scores. Lower-risk MDS patients had significantly lower HRQoL than those from the Lifelines cohort, as illustrated in both the index score and in the five different dimensions. Multivariable linear regression analysis demonstrated that MDS had an adjusted total impact on the EQ-5D index score (B = − 0.12, p < 0.001) and an anemia-independent “direct” impact (B = − 0.10, p < 0.001). Multivariable logistic regression analysis revealed an anemia-independent impact of MDS in the dimension mobility, self-care, usual activities, and anxiety/depression (all except pain/discomfort). This study demonstrates that the major part of the negative impact of lower-risk MDS on HRQoL is not mediated via anemia. Thus, the therapeutic focus should include treatment strategies directed at underlying pathogenic mechanisms to improve HRQoL, rather than aiming predominantly at increasing hemoglobin levels.
Highlights
Myelodysplastic syndromes (MDS) are acquired clonal disorders of the hematopoietic stem cell, which are characterized by bone marrow failure resulting in blood cytopenias
Combining data from a large number of newly diagnosed lower-risk MDS (LR-MDS) patients and a large general population-based cohort, we confirmed the negative impact of LR-MDS on health-related quality of life (HRQoL), which was present in the dimension mobility, usual activities, self-care, and anxiety/depression
This study is the first to assess the anemia-independent impact of LR-MDS on HRQoL and demonstrates that the major part of the negative impact is not mediated via anemia
Summary
Myelodysplastic syndromes (MDS) are acquired clonal disorders of the hematopoietic stem cell, which are characterized by bone marrow failure resulting in blood cytopenias. Several studies have been conducted to assess health-related quality of life (HRQoL) in patients with MDS. Patients with MDS are classified into subgroups based on several biological parameters to predict overall survival and the risk of transformation to acute myeloid leukemia (Revised International Prognostics Scoring System; IPSSR). Individuals with higher IPSS-R risk MDS have a poor prognosis [6, 7]. Treatment for patients with LR-MDS is focused on restoration of cytopenias, to delay progression to acute myeloid leukemia and prolonging survival [8]. Treatment decisions for lower risk IPSS-R MDS often focus on improvement of quality of life (QoL) [9]
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