Background: Myelodysplastic syndromes (MDS) comprise a group of hematological malignancies that prevail in elderly patients. MDS patients require regular monitoring and personalised treatment, which is generally not curative. Access to specialized MDS centers is warranted. In the UK, the level of support to improve quality of care and quality of life (QoL) for such patients is poorly understood. We performed a survey in MDS patients to better evaluate the level of satisfaction of current care and unmet needs.

Materials and Methods: A paper based survey was conducted in the UK in MDS patients referring to the MDS UK Patient Support Group. Total of 962 questionnaires were distributed (862 by newsletter; 100 posted to a random set of MDS UK members). Patients willing to take part sent back the completed survey by prepaid envelope. The survey covered 139 items on demographics, referrals, access to health care, financial impact, disease information, treatment and patient reported outcomes (PRO), including the instrument QOL-E.

Results: One hundred seventy one patients of mean age 69±10 years (95 males, 76 females) completed the survey. Median duration of MDS was 3 (IQR 1-5) years. Level of education was secondary school in 30%, college degree in 33%, and university degree in 37%. Sixty-six percent was living with a spouse, 12% with others, while 23% lived alone. Seventy-eight percent was retired. Thirty-four percent lived in rural vs 67% in urban areas. Thirty-three percent had other long-standing illness. While most patients were referred to hematologists within 8 weeks, 13% had a referral > 26 weeks from first signs and symptoms. Most saw a hematologist after 1 to 3 visits but for 25% of patients this required at least 4 General Practitioner (GP) visits. With GPs unfamiliar with MDS, 35% took 4 or more visits to refer their patients. One third of patients does not know or recall their initial diagnosis and 38 continue to not know their MDS subtype. Knowledge of disease type and prognosis was poorer in those with lower incomes. Staff explained MDS as bone marrow failure to 62%, a blood disorder to 42% and refractory anemia to 29%, while the terms pre-leukemia/blood cancer/malignant condition was used for only 43%. Satisfaction with the level of verbal information at diagnosis was experienced in 39%, associated with income (p=0.048). Most patients received written information and found it useful. Change of employment due to MDS occurred in 19% and 15 cases retired because of disease. At the time of the survey, almost half of the patients referred absence of symptoms or only mild symptoms that did not impact on abilities while 15% required assistance. However, 65% referred symptoms at diagnosis that consisted of fatigue in 76%, dyspnea in 62%, bruising in 32%, infections in 18%, and bleeding in 12%. Ninety seven cases had received transfusions and 60 were red blood cell transfusion dependent (RBC-TD) at the time of the survey, declaring compromised abilities, compared to 41% of the transfusion free (RBC-TF) patients (p<0.0001). Further, RBC-TD patients were spending more time worrying about MDS compared to RBC-TF (p=0.007) with a higher emotional burden (p=0.004). Treatments were growth factors (38%) and erythropoiesis stimulating agents (67%), 17% received iron chelation and high risk MDS treatment was given in 25%.

QOL-E showed good reliability in all domains (Cronbach alfa >0.7) except sexual domain. Scores were significantly lower (worse QoL) in RBC-TD patients in all domains. Physical issues caused by MDS as perceived by patients strongly correlated with all QOL-E domains (P<0.0001). Duration of MDS correlated with QOL-E functional well-being (p=0.01).

Conclusions: Overall, MDS patients in the UK were dissatisfied with the verbal information provided at diagnosis, leading them to look up potentially unreliable information online. However, written information was useful. Most patients stated that their GP was unfamiliar with MDS at diagnosis thus increasing time to referral. RBC-TD patients experienced MDS as a worrisome disease, with a high emotional burden, resulting in a significantly worse QoL. TD patients have unmet needs requiring additional support and time from staff, but also carers and support groups, showing a clear demand for more discussions between healthcare staff, patients and support sources, to maximise the care and advice available.


Oliva:Novartis: Consultancy, Speakers Bureau; Celgene: Consultancy, Other: Royalties, Speakers Bureau; Janssen: Consultancy, Speakers Bureau; Sanofi: Consultancy, Speakers Bureau; Amgen: Consultancy, Speakers Bureau; La Jolla: Consultancy. Agberemi:Novartis: Research Funding; Janssen: Research Funding; Celgene: Research Funding. Wintrich:Janssen: Research Funding; Novartis: Research Funding; Celgene: Research Funding, Speakers Bureau.

Author notes


Asterisk with author names denotes non-ASH members.

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