Myelodysplastic syndromes (MDS) prognosis

MDS can sometimes be cured with a stem cell transplant, or very rarely with intensive chemotherapy. However, usually MDS cannot be cured, but it can be controlled and often improved with treatment.

Your prognosis can depend on many factors, including those not related to MDS, such as your general fitness and age.

However, to allow doctors to make the best treatment decisions, MDS doctors and scientists around the world have designed a number of scoring systems to help predict how your MDS is likely to behave. The most commonly used scoring system is the revised International Prognostic Scoring System (IPSS-R).

Your IPSS-R score can help make treatment decisions and is calculated from:

• your blood count results at the time your MDS is diagnosed
• the number of abnormal immature cells (blasts) in your bone marrow at diagnosis
• the chromosome test results from your bone marrow at diagnosis.

You add together the scores you get for the above, to give a final score, which puts you into one of the following IPSS-R risk groups:

• very low
• low
• intermediate
• high
• very high.

These risk groups describe the expected risk of developing acute myeloid leukaemia (AML) and expected survival. This helps your doctor to identify and discuss with you the best treatment choices for you as an individual.

It’s important to understand that the expected outcomes for each risk group only give an idea based on what happens in that group of patients as a collective. This can inform discussions about the future and options for treatment, but it is not possible to predict the outcome of an individual person.