New Tool: MDS Classification

[Marrowforums]

Marrowforums is pleased to announce a new site feature for patients and caregivers: The MDS Classification Tool. It is one of our growing collection of tools for patients and caregivers.

What is MDS Classification?

MDS is a syndrome, not a single disease. Subtypes such as MDS/Refractory Anemia and MDS Del(5q) and classifications such as MDS Intermediate-1 are critical parts of your diagnosis.

Physicians use the International Prognostic Scoring System (IPSS), the World Health Organization (WHO) classification system, and the older FAB (French, American, British) classification system to identify and assess your disease, to determine the most appropriate treatment options, and for statistical evaluation used in research. You'll find many references to IPSS classifications and WHO and FAB subtypes in the medical literature about MDS. See MDS Classification for details.

The MDS Classification Tool can help you understand your IPSS score, IPSS classification, WHO subtype, and FAB subtype by matching test results to MDS classifications and providing explanations of the scoring and subtypes.

We suggest that you ask for copies of the test results that led to your MDS diagnosis and classification, to help with your understanding, and that you talk to your doctor about your IPSS score, how your MDS was diagnosed and classified, and how it affects treatment recommendations.

Feedback welcome

The MDS Classification Tool is new and we'd like your feedback so we can evaluate and improve it. Please give us your comments by posting in this thread or contacting us privately. We'd like to know how well the tool works for you, whether you find it useful, and any "glitches" you encounter.

Although the MDS Classification Tool can help you learn more about your health, and identify questions to ask your doctor, please remember that tools like this must not be used to make your own diagnostic or treatment decisions or to replace medical consultations.

[Lisa Z]

Not sure where the data came from, but we should be careful what is posted about life expectancies. Most data on line is out of date. That chart can prove to be very depressing for people on this site. I met people at the conference in June that have had one treatment or another and are living 15 - 20 years since treatment with AA or MDS. Just saying..... this is perhaps not the best thing to do.

[mausmish]

The classification tool is very helpful but I agree with Lisa that it might not be a good idea to include survival times, even though they are just statistical means--patients should discuss that with their own physician, based on their own treatments and experience. The tool can certainly help people wade through the classification jargon to reach a point of being prepared to ask better questions of their medical providers and to do research based on their own classification.

[Al's Wife]

I, too, agree with Lisa Z. When my husband was first diagnosed with MDS in May 2010, the doctor said his prognosis was 1 to 6 years. We were in shock, to say the least! But after coming home and reading and learning as much as I could about MDS, I found that people, even with his classification, have lived much longer. In addition with all the ongoing clinical trials the prognosis today is much better than five years ago.
Even now, four months into treatment, my husband still hears those numbers though and it is all I can do to keep him upbeat and positive.
I think it's good to have the classification tool but I don't think it's good to have the survival times listed.
Anyhow, just my two cents!
Linda

[Lisa Z]

If I thought I was only going to live 4 more years, tomorrow would be the last day that I would work. I'd at least want the remaining years to be work free and totally enjoyable with my family and doing what I love, every day!. But, I truly believe, that even though I am likely low risk to low-intermediate, (what ever that is), I think I will live for a long, long time and I have begun to live my life accordingly, to some extent. If I ever thought that I had just years to live, I think I would be depressed all the time.

My docs will not even give me a prognosis in terms of life expenctancies. They really don't know. Everyone is different. And, like I said, I met some amazing people at the International conference who were very encouraging, as far as that goes, who have lived long lives with bone marrow failure diseases. And, when I was getting transfusions at my local hospital, (haven't needed one in 14 months :-)), one of the nurses told me she had a patient who had been getting them for 20 years! (don't know her disease though). So, statistics are just that. Sure, they will be accurate for some of us, but I don't think one should put too much weight on them. I still feel, it's something we don't need staring us in the face, and certainly not for those newly diagnosed. Just my opinion.

[Chirley]

Hi,

In march my doc told me I had a MEAN life expectancy of 3 and a half years, it has now been reduced to 18 months. He went to great lengths to make sure I was aware that MEAN included people who lived a very short time and others who lived for years depending on a lot of other factors such as age and co morbidities. He also stressed that these time lines were for people who didn't receive treatment.

All in all the defence mechanism within me wouldn't allow me to accept that time frame in any case. We all think/know that those statisics don't apply to us....they belong to other people.

Bye

Chirley

[akita]

This tool makes me unhappy in several ways

- I would need the links to the original websides of the different systems. (FBA, WHO, IPSSS, WPSS..) plus notice of the last actualization of the content. There are so many explanations/guides in the internet, some of them not recently updated and with divergent content in details.
Please could you send me the links, at least into this thread!?

- Its irritating for the patients - as you could read in other postings of this thread, that there are survival prognoses indicated.

Patients confound the meanings of "mean" and "median", and almost nobody knows what "median" means. There is no range indicated in these scores which would help understanding, that there is a certain variety in life expectations. Your life expectancy changes with treatments e.g. SZT. After that you have other life expectances than before. Patients seem to be much interested in the special individual chances they can get by a special treatment. Scoring the whole illness helps a little for some people (like me, additionally browsing studies), but perhaps not the MDS-Patients-public.


A little bit more of explanations for this would help some people not to panic.

- It is sometimes not clearly expressed if parameters like blast counts specialities of the bone marrow etc. have to exist cumulatively or alternatively to lead to the special desease category like "RAEB2 or RA.

If a doctor tells a patient today that he has RT or immune MDS, where can he find further informations? Not in the classifications.

- Networking, internetforums, self help groups for patients lead to a widespread sharing of experiences with diagnoses, treatments, coping with the illness for each patient. Participating for a longer time period in self-help-activities means to have a big knowledge also of different patients biographies that do not go together with official school medicine. There exists a wide source for informations especially today in the internet, often offering alternative treatment methods which are actually not fully explained by school medicine, but can lead to success-experiences.

Therefore i see a sort of gap between a lot patients and the success in trying approaches to them by patients education.

It`s a sort of mosaic-learning bottom-up in patients self help. These classifications are top-down and only a few patients will understand the full meaning. The big strength of self help consists in my opinion in challenging the prognoseses of school medicine in providing better perspectives as in the average treatment guidelines for practicioners/health providers described. And thats what is wonderful and exiting in patients self help. Never giving up, ongoing learning and sharing.

Kind regards,
Margarete

[akita]

1. As i wanted to know the exact formulations of the WHO Classification 2008 i searched for the original..

It is published in a book:

Swerdlow SH, Campo E, Harris NL, et al. eds.
WHO Classification of Tumours of Haematopoietic and Lymphoid Tissues, Fourth Edition

you can buy it per

http://apps.who.int/bookorders/angla...70&codcch=4002

or amazon.com (a bit cheaper)

Also hematologists and treatment centers have got this original version. I copied the 20 pages concerning MDS Classification in our library on Vienna MedUni. It was not easy to get it, as there exists only one exemplary in Vienna in a public library, and this it stored in a special place: the working table of an employee of a special institute, where the secretary had first to process an investigation who of the servants/doctors that where on Christmas leave had the book... I found the pages very informative for explaining a lot of specialities you cannot read in the common webinformations for WHO Classification 2008. If there ar difficulties in understanding the classification in specific points, these could be discussed with others. But there should exist one single version for a fruitful discussion.., not the 100 slightly different ans also simplified internet-versions. Not every patient is uncapable understanding this classification in detail. So there exists no real reason for such simplifying (or just not indicating the original source) .

MDS is a long lasting disease and it should be possible in many cases that patients and caregivers study the basics of the MDS-Diagnoses profoundly. Even as a patient in a hematological ward it is possible to conduct internet recherches and studies as i did in the 15 months of my stationary treatment.. I did these medical recherches in the internet even years before diagnosis for MDS/AML. It is possible to do the same for almost every person that has passed college/university or is otherwise educated, if enough time is invested. This leads to extended knowledge and responsibility in the patient/caregiver who does this (so i found). Thus the patient/caregiver can much more contribute to the treatment process as it was common in the pre-internet-age.

2. The following article provides additional explanations and reverences to other articles dealing with the New-Classification issue:

Blood, 30 July 2009, Vol. 114, No. 5, pp. 937-951.
Prepublished online as a Blood First Edition Paper on April 8, 2009; DOI 10.1182/blood-2009-03-209262.

http://bloodjournal.hematologylibrar...09-03-209262v1

3. Of course it is not possible to put the whole content of the WHO Classification to a webside, but it would be useful, if there would be indicated

- that this is a shortened version
- datas of the original source
- where the original can be purchased.

Also it would be advantageous if there would exist the option to buy the Classification 2008 - whole volume or special parts of it (e.g. only the 20 MDS pages) by internet directly to a moderate price.

This could contribute to a better understanding of the Classification by the interested public.

.. Some thoughts,

Kind regards,

Margarete