By Roger M. Lyons, MD, FACP
What is the IPSS and the IPSS-R scoring systems and how will this help patients with MDS? This is a study that took place over 10 years looking at the US Oncology iKnowMed medical record system to define the course of patients with a myelodysplasia. There were 1400 physicians involved in the trial.
So it's a huge database. Of course, this was not a prospective study, so some of the data is not absolutely in a form that can you be used for research. Nonetheless, there was excellent data. Some of the importance of the data depends on the stability of the staging system, the revised IPSS score, the IPSS-R has been in place and unchanged for over 10 years. And that is the 10 year period that we studied, from our medical records, we were able to gather a huge amount of data concerning the patients and their outcomes and how it relates to their prognostic scoring system. We think that this is going to be a major database for people to use, ongoing, to compare to what their data is. Although it may not be head to head, it's real world data in the community setting, and it may be a good marker for people to use to evaluate whether or not there is progress being made.
Most people are interested in why we did the study and obviously we think that there's a lot to be learned about MDS (Myelodysplastic Syndromes) and we've got a long way to go and unfortunately we have not made a lot of progress over the last, several years. The question of course was whether or not we could define any difference in outcomes over the years.
And this study was not designed to do that. One of the questions is, can we de detect a difference over the 10 year period? Studies not designed for that although we may think of trying to figure out how to do that in the future. But right now the main portion of the study was the quality and size of the data.
And tho people were asking about that and I think the data is self-evident in terms of the volume of data and the, it's usefulness.
Individuals are assigned to one of five risk groups by the IPSS-R, ranging from very low risk to very high risk, according to the likelihood that they would pass away or advance to acute myeloid leukemia (AML). This score is not dynamic and is only meant to be used at the time that a diagnosis is being made. On the other hand, as the disease worsens (disease severity), the score will continue to rise.
It is a scoring system that has been verified and can be reproduced, and it is used to measure the severity of an illness and how well it responds to therapy. A total of seven questions pertaining to voiding symptoms are included in the IPSS. If you score between 0 and 7, it suggests that your symptoms are light, between 8 and 19 it shows that your symptoms are moderate, and between 20 and 35 it indicates that your symptoms are severe and help determine the patients quality of life.
I think it will, I think it will provide clinicians with reassurance that the scoring system that everybody uses is valid. And when they talk to patients, they'll be able to give them a reasonable prognosis based on the IPSS score. As you were probably aware of the, there are multiple new scoring systems being evaluated, adding age as a variable and adding mutational status, genetic mutational status, and for those the age portion seems to be important.
And that will be added in eventually. And so when we talk to patients there'll be an age component added onto this. In terms of the mutational status, the data is not entirely clear that the prognostic score is ready for use. It does give data about additional data, about prognosis and by medical treatment options, but in, in total, it's not ready for general use.
So the data will be useful for clinicians and for patients to look at what the status of this disease (disease severity) is and what expected long-term.
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iKnowMed is a robust and interoperable electronic health record (EHR) system for oncology clinics that improves the quality of cancer care and the efficiency of medical treatment in all care settings. The purpose of iKnowMed is to simplify and enhance the process of providing evidence-based, high-quality cancer care as well as its documentation. Oncology clinics are able to successfully participate in alternative payment models and value-based care while still maintaining the highest standards of treatment thanks to the comprehensive electronic health record, which is an invaluable resource.
The next step is to delve into more detail. This is the first run on this for this data and is being presented in abstract form. Of course, we intend to publish this, and as we do that, we'll be digging much deeper into the, into the database, and hope that we'll be able to come up with other pieces of information that will be useful for the medical community.
I think the first key takeaway away is that the IPSS-R Revised Risk 5 score remains useful. The second is that if you compare the data to the original, IPSS-R data, which was undertaken in academic medical centers, that it actually is remains quite similar. So that's reassuring that it's a valid prognostic indicator.
It's discouraging that it does not appear to have changed over this time period with the IPSS score, IPSS-R score (total score many times) having been developed before we started this study. The outcomes are not different really, you could see with the original academic evaluation.
So I think that there's a lot of things to learn from this. But I think the excitement and hope is that there will be new treatments available. With tongue in cheek, I've said that the best thing we could do is figure out how to make people 25 years younger, since this is a delete disease of older people with the average age of 75.
If we're not able to do that hopefully we'll find tolerable treatments for patients that give added survival time with good quality of life.
Only that I think that we need to be very aggressive in trying to enroll patients into clinical research studies to help with clinical judgment. When you review them and they appear potentially beneficial for your patient, we need to accumulate more data so that we can make advances in this disease (and it's disease severity).
Dr. Roger M. Lyons is board-certified in internal medicine and hematology. Dr. Lyons participates actively in clinical research. He founded Texas Oncology-San Antonio Medical Center. Dr. Lyons is the Medical Director of Hematology for US Oncology and McKesson Network, the Medical Director of Laboratory Services for Texas Oncology, and the Medical Director of the Myelodysplasia Foundation Center of Excellence in San Antonio. Myelodysplasia, leukemia, lymphoma, and multiple myeloma are among his areas of expertise in oncology. He is also interested in hematological problems that are not malignant, such as thrombosis, coagulation, platelets, and vascular disorders. He has published approximately 90 articles in publications with peer review.