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Understanding your DIPSS risk score | CION Cancer Clinics
DIPSS is a score from 0 to 6 that sorts myelofibrosis into four risk groups. Age over 65, white cells above 25 × 10⁹/L, blasts of 1% or more and whole-body symptoms each add one point; haemoglobin below 10 g/dL adds two. The group guides how actively doctors treat, but it cannot predict one person's course. Lab ranges differ, so results are always confirmed with repeat tests. At CION Cancer Clinics, every leukaemia, MDS and MPN case is reviewed by our haematologist and discussed at a tumour board before a plan is agreed.
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Medically reviewed by Dr. Basudev PokhrelConsultant Haematologist · last reviewed September 2026, next review due September 2027
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On this page
- What is the DIPSS score in myelofibrosis?
- Which five things add points to your DIPSS score?
- How do you add up a DIPSS score?
- What does each DIPSS risk group usually mean for treatment?
- What can a DIPSS score not tell you?
- What do people often misread about their DIPSS score?
- Common questions about the DIPSS score
The short answer
What is the DIPSS score in myelofibrosis?
DIPSS is a points score, from 0 to 6, that places a person with myelofibrosis into one of four risk groups: low, intermediate-1, intermediate-2 or high. It adds points for age over 65, low haemoglobin, a high white cell count, blasts in the blood and whole-body symptoms. Doctors use it to decide how actively to treat.
What the letters stand for
DIPSS means Dynamic International Prognostic Scoring System. Prognostic means it describes the likely course of the illness. Dynamic means it can be worked out again at any point, not only at diagnosis. That matters, because your score can change as your counts and symptoms change.
Why your haematologist uses it
Myelofibrosis varies enormously between people. Some live with few problems for a long time; others need treatment soon after diagnosis. A score gives your team a shared, tested way to judge risk, so treatment is neither rushed nor delayed. It helps answer practical questions: is watching closely enough, should tablets start, and is a stem cell transplant worth discussing?
Who it applies to
DIPSS was built for primary myelofibrosis. For myelofibrosis that followed polycythaemia vera or essential thrombocythaemia, a different score may be used alongside it or instead. The score is also not meant for early, pre-fibrotic disease, where scarring is minimal. If you are not sure which type you have, ask before reading too much into a number on a report.
How points are given
Which five things add points to your DIPSS score?
Risk factor
Points
Age over 65
1 point
White cell count above 25 × 10⁹/L
1 point
Haemoglobin below 10, measured in g/dL
2 points, the only factor worth two
Blasts, very immature cells, making up 1% or more of the blood
1 point
Whole-body symptoms: marked weight loss, drenching sweats or unexplained fever
1 point
Not sure whether this applies to you?
Ask an oncologistA worked example
How do you add up a DIPSS score?
Start from zero
Take the most recent blood count, the blood film report and an honest account of symptoms. Every factor that is present adds its points. Factors that are absent add nothing.
Check each factor
Imagine someone over 65 whose haemoglobin is below 10 on the g/dL scale, with a normal white cell count, no blasts and no sweats or weight loss. Age gives one point. Haemoglobin gives two. The white cells, blasts and symptoms give nothing.
Add the points
That person scores three. Three falls in the intermediate-2 group, even though they may feel fairly well and only one blood result is out of range. This surprises many families. It shows how much weight the score puts on haemoglobin, and why treating it well matters.
Confirm with repeat tests
A single low haemoglobin after an infection or bleed may not reflect the usual picture. Your haematologist usually confirms a result on a repeat test before relying on the score.
The four groups
What does each DIPSS risk group usually mean for treatment?
These are general directions, not rules. Your own plan also depends on your spleen, platelets, gene results and fitness.
Low risk: 0 points
Often watched closely with regular blood tests and examination. If symptoms or the spleen are troublesome, tablets may still be used to ease them. Transplant is not usually advised in this group, because its risks tend to outweigh the likely benefit.
Intermediate-1: 1 to 2 points
Treatment is guided mainly by symptoms, spleen size and haemoglobin. Some people are watched; others start a JAK inhibitor such as ruxolitinib.
Extra gene tests may shift where you sit.Intermediate-2: 3 to 4 points
Active treatment of symptoms and spleen is common. For fitter people, doctors usually start a discussion about whether a stem cell transplant should be considered. That is a conversation, not a decision: it includes looking for a donor, checking fitness and weighing the risks honestly.
High risk: 5 to 6 points
Treatment is usually more active. Transplant is often discussed if you are fit enough. If it does not suit you, because of age, other illnesses or no suitable donor, the focus is on symptom control, managing haemoglobin and protecting quality of life.
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Being straight with you
What can a DIPSS score not tell you?
A DIPSS score describes groups of people, not one person. It cannot say how long you will live, how you will respond to treatment, or what will happen next year. Two people with the same score can have very different courses.
What it leaves out
DIPSS does not include gene results, platelet count, the need for transfusions or the marrow's chromosome pattern. Newer scores, such as DIPSS-plus and MIPSS70, add some of these. Your haematologist may use one of them, especially when a transplant decision is close.
Numbers differ between labs
Reference ranges vary between laboratories. A haemoglobin just either side of a cut-off can move your score by two points. That is why one result is always read alongside symptoms and repeat tests, and never used alone to make a big decision.
What to ask
Ask which score your team used, which group it puts you in, and which factor carries the most weight in your case. Ask too what change would make them revisit the plan.
Never start, stop or change treatment because of a score you worked out yourself. Your treating team decides.Commonly believed
What do people often misread about their DIPSS score?
"High risk means nothing can be done."
A high score is a reason to plan more actively, not to give up. Symptoms, spleen size and low haemoglobin can all be treated, and some people are assessed for transplant.
"Low risk means we can skip follow-up visits."
DIPSS is dynamic because scores change. A falling haemoglobin or new sweats can move you up a group. Regular blood tests are how that change is caught.
"The score is fixed at diagnosis for life."
It can be recalculated at any visit. Treatment can also shift it, for example if haemoglobin improves or symptoms settle.
"A friend with the same score will follow the same path."
The score groups people broadly. Gene changes, other illnesses, fitness and response to treatment all differ, so comparing paths is rarely helpful and often upsetting.
Did you know
Haemoglobin is the only DIPSS factor worth two points. That is why treating low haemoglobin, and recording transfusions carefully, matters so much in myelofibrosis. Keep every blood report in date order and bring them to each visit.
Questions we are asked
Common questions about the DIPSS score
My father's report says intermediate-2. What does that mean?
It means he scored 3 or 4 points, so his disease is judged to carry a moderately high risk. Active treatment of symptoms is common in this group, and if he is fit, doctors may discuss a stem cell transplant. His own plan depends on more than the score, so ask his haematologist to explain it.
Is DIPSS the same as IPSS?
They use the same five factors. IPSS is used only at diagnosis and gives one point for low haemoglobin. DIPSS can be used at any time and gives two. Because of that, the same person can land in a slightly different group on each.
Can my score go down?
Yes. If haemoglobin rises above the cut-off or whole-body symptoms settle with treatment, the recalculated score can fall. A lower score is encouraging, but the underlying disease is still present, so regular follow-up continues.
Does a transfusion change my haemoglobin points?
A transfusion raises haemoglobin for a while, which can make a single result look better than the usual picture. Doctors usually take transfusion need into account, and scores such as DIPSS-plus count it directly. Tell your team about every transfusion, including ones given elsewhere.
Does DIPSS decide if I get a transplant?
It is one important input. Transplant decisions also weigh age, fitness, other illnesses, gene results and donor availability. CION's haematology team can assess whether transplant is worth considering and coordinate referral to a qualified transplant centre for a formal opinion.
Can I work out the score myself from my report?
You can follow the steps to understand it, but ask your haematologist to confirm it. Blasts come from the blood film report, symptoms need careful judgement, and lab reference ranges differ. A score worked out at home can easily be off by a group.
Why does the score not include my gene result?
DIPSS was designed before gene testing was routine. Newer scores such as MIPSS70 add gene changes because some carry extra risk. If your team has sent a gene panel, ask whether the result changes your risk group.
How often will the score be checked?
There is no fixed timetable. It is usually reviewed when blood counts, symptoms or the spleen change noticeably, or before a major treatment decision. Keeping reports in date order makes it easier for your haematologist to see the trend at each visit.
Your Haematologist
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Dr. Basudev Pokhrel reviews blood counts, transfusion needs and blood disorders, and works with the CION tumour board on blood cancers.
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Sources
- Leukemia & Lymphoma Society — Myelofibrosis
- National Cancer Institute — Chronic Myeloproliferative Neoplasms Treatment (PDQ) - Patient Version
- American Society of Hematology — Blood cancers
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
Myelofibrosis ExplainedThe basics behind each risk factorLow haemoglobin in myelofibrosis and how it is managedThe factor worth two pointsStem cell transplant for myelofibrosisWhen a higher score leads to this discussionPrimary vs Secondary MyelofibrosisWhy a different score may be used for secondary disease
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Send us your latest blood count and blood film reports. Our haematology team will explain your score and what it means for your plan. One helpline serves every CION centre.