Background: Myelodysplastic syndromes (MDS) comprise a group of clonal myeloid malignancies primarily affecting the elderly and resulting in limited survival and poor quality of life. A previous survey of MDS patients demonstrated that lower hemoglobin (Hgb) levels and platelet counts are associated with worsening quality of life.1 We conducted a follow-up survey to:

  1. Examine the relationships between MDS patients’ quality of life and Hgb/platelet levels;

  2. Evaluate changes in these outcomes over time.

Methods:The MDS Foundation recruited MDS patients between July 2013 and June 2014 to complete a one-time, web-based questionnaire. The survey included questions about patient demographics, disease risk (i.e., International Prognostic Scoring System [IPSS] score), and MDS characteristics. Quality of life was assessed using the standardized Functional Assessment of Cancer Therapy (FACT)-General (FACT-G; total score and Physical, Social/Family, Emotional, and Functional Well-Being subscales) and Thrombocytopenia scales, all of which were evaluated according to published scoring algorithms. Responses were analyzed using descriptive statistics, and statistical testing was conducted to compare FACT-G scores by categories of Hgb levels and platelet counts. Proportions and comparative results exclude missing data.

Results: A total of 727 patients participated in the survey. More than half (58%; 331/570) of those who reported an MDS diagnosis date had been diagnosed for <3 years. Among patients who provided demographic data, patients were on average 68 years of age (n=502), 47% female (234/502), and 90% Caucasian/white (452/503). Over half of respondents (56%; 277/495) had completed 4+ years of college, and 20% (97/498) reported working full or part-time. Less than half (45%; 327/727) reported knowledge of their IPSS risk score; of these, 72% (237/327) were lower risk (IPSS “low” and “intermediate 1”) and 28% (90/327) were higher (IPSS “intermediate 2” and “high”).

On a scale of 0 to 108, mean FACT-G total score was 73.1 among all respondents, 75.5 among those with lower IPSS risk, and 72.2 with higher risk. FACT-G total and subscale scores were generally higher among patients with Hgb≥9. Significant differences (p<0.01) by Hgb level existed in all subscales except Social/Family Well-Being (p=0.718), and by platelet count (p<0.02) for all except Social/Family (p=0.795) and Emotional Well-Being (p=0.141).

Compared with respondents of the prior survey, current patients were: older (mean age: 68 vs. 63 years); more likely to be female (47% vs. 43%), Caucasian/white (90% vs. 83%), and completed 4+ years of college (56% vs. 40%); and less likely to be working full or part-time (20% vs. 33%). Fewer current than prior patients reported knowledge of their IPSS risk score (45% vs. 53%); of these, more current than prior patients were higher IPSS risk (28% vs. 21%).

Results from both surveys indicated significant differences (p<0.01) by Hgb level in all FACT-G subscales except Social/Family Well-Being. Platelet counts significantly impacted the Functional and Thrombocytopenia but not Social/Family subscales in both surveys, and their impact on the Physical and Emotional subscales changed over time.

Conclusions: The MDS patient population has changed somewhat but not dramatically in recent years. Their slightly older age and higher IPSS risk may in part explain why current patients are less likely than prior patients to be working, despite their higher education level. Hgb levels and platelet counts significantly impacted most aspects of MDS patients’ quality of life over both time periods. Until therapy options that minimize symptomatic cytopenias become available, more research is needed to identify better ways to improve the physical, functional, and emotional well being of symptomatic MDS patients. Focusing the attention of physicians, family members, and other MDS support structures on these aspects of patient care will benefit patients and their caregivers alike.


  1. Kurtin S & Demakos E. Disease Burden and Treatment Impact associated with Myelodysplastic Syndromes: Initial Estimates. Leukemia Research, May 2011(S) – Proceedings of the 11th International Myelodysplastic Syndrome Symposia. Abstract 560.


Kurtin:Celgene, Millenium, Onyx, TEVA, Onconova, Incyte: Consultancy. Chang:Partnership for Health Analytic Research (PHAR): Employment, I am an employee of PHAR, LLC, which was paid by MDS Foundation to conduct the analyses described in this abstract. Other. Bentley:Partnership for Health Analytic Research (PHAR): Employment, I am an employee of PHAR, LLC, which was paid by MDS Foundation to conduct the analyses described in this abstract. Other.

Author notes


Asterisk with author names denotes non-ASH members.