MDS Risk Scoring

Myelodyspastics Syndrome (MDS) Prognosis: Risk Scoring Systems

Prognosis refers to the expected outcome or survival from MDS and is therefore different from classification. Your prognosis can depend on many factors, including those not related to MDS, such as your general fitness and age. However, to allow your doctor to make the right 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. Over time, these scoring systems have evolved to give more accurate estimations.

The most commonly used scoring system is the Revised International Prognostic Scoring System (IPSS-R). This replaces the previous IPSS and it's recommended by the British Society of Haematology.

The IPSS-R score 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

The calculator adds together the individual scores to give a final score which puts you into one of the following IPSS-R risk groups, which 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.

  • Very low
  • Low
  • Intermediate
  • High
  • Very high

It is important to understand that the expected outcomes for each group give an indication of what may happen in that group of patients as a collective. This gives a useful framework for a discussion about the future and the options for treatment, but it is not possible to give a precise outcome figure for an individual patient. As our understanding of the molecular changes seen in MDS increases, this may allow us to more accurately work out an individual patient’s outcome and guide treatment further.

New MDS Guide (2024)

downloadable comprehensive MDS Guide for patients, families and care-givers which describes the various types of MDS, diagnosis, treatment and more. Co-written by the MDS UK Patient Support Group and Leukaemia Care, this guide is a brand new edition (April 2024).

If you'd prefer a hard copy, email us at admin1@mdspatientsupport.org.uk and we'll be happy to post one out to you.

Revised International Prognostic Scoring System (IPSS-R)

Learn more about the IPSS-R, developed in 2013, which has been the new standard since 2015-2016

Go to site

Myelodysplastic Syndromes by Austin Kulasekararaj

Download this presentation and learn more about MDS and the risk associated with each MDS type.

Download PDF

Myelodysplastic Syndromes, Part 2, by Dr Austin Kulasekararaj

Download this presentation and learn more about how long it takes to diagnose MDS, the risk scoring of the different types of MDS and much more.

Download PDF

High Risk MDS and Hypomethylating Agents, by Dr Kavita Raj

An in-depth presentation which describes clearly how to determine the best treatment options for High Risk MDS patients.

Download PDF

Free donations by shopping