Quality of Life Is Impaired in Anemic MDS Patients, and May Still Remain Poor Even When Hemoglobin Improves

Background: Quality of life (QoL) is impaired in MDS.

Aims: 1) To study QoL for various levels of anemia in MDS patients at diagnosis, 2) Compare with non-MDS controls. 3) Compare at MDS diagnosis to 1 year later.

Methods: Patients in The Israel MDS registry fill out the EQ-5D QoL questionnaire. The evaluated parameters are: mobility, self-care, daily activities, pain/discomfort and anxiety/depression, each scored 0(normal), 1(mild/moderate), or 2(poor). They also evaluate their general health using a visual analogue scale (VAS), scoring from 0 (poor) to 100(excellent). Anemia was classified as none/normal (Hb≥12.5 g/dl), mild (10≤Hb<12.5), moderate (9≤Hb<10), severe (8≤Hb<9) or very severe (Hb<8). To assess QoL dynamics, MDS patients repeat this every 6 months .

For controls, we used VAS to assess QoL of patients admitted to the Department of Medicine.

Results: In total, 126 MDS patients participated: 19, 40, 17, 21 and 29, from normal to very severe anemia, respectively. Fig.1 shows mean QoL of the 5-parameters for all patients (A), and for each individual (B), as well as the mean VAS score for all patients (C) and for each individual (D). Anemic MDS patients show a wide QoL variability (patients with the same Hb behave differently, Fig.1, B, D). Also, note the drop in QoL from moderate to severe anemia (below 9 g/dl, p=0.06, for 5-parameter; p=0.01, for VAS).

In the non-MDS controls (n=141), there was impaired QoL in anemic patients as compared to those without anemia (VAS, Figure 2; p=0.02). However, there was no significant difference in QoL among patients with various degrees of anemia.

Follow-up QoL data (1 year) were available for 61 MDS patients (Figure 3). 27 (44%) increased Hb. 32 (52%) decreased, and 2 (3%), had no change. Of the 32 who decreased Hb, average QoL deteriorated by -11.88 [95%CI: -17.96, -5.79]; 24 patients (75%, Figure 3, left-lower quadrant) had decreased VAS score; some still had improved QoL (16%), or stayed the same (9%). Of the 27 who increased Hb, average VAS still reduced by -6.48 [-14.08, 1.12]. The minority increased QoL (26%), or stayed the same (19%). Most (56%) still deteriorated in QoL (right-lower). The QoL results using the 5 parameters was consistent.

Conclusions: In this preliminary study: 1) Poor QoL in anemic MDS is variable and not linear, suggesting that other factors, in addition to Hb, affect QoL. 2) The sharp drop in QoL with Hb<9 g/dl (Figure 1, A and C from blue to pink), might lead to a therapeutic paradigm shift, with transfusion recommendations for patients with Hb<9. 3) QoL in anemic MDS patients might differ from non-MDS. 4) Anemia treatment and Hb rise are not necessarily associated with improved QoL. Larger studies will help determine QoL in MDS and other anemias and when and how to treat.

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