The Convalescent, Artist Gwen John
From the Fitzwilliam Museum
Uploaded by Saibo on Wikimedia Commons
A common frustration among lupus patients is the inability to accurately describe exactly how the disease is affecting them. Lupus can be difficult to diagnose and challenging to treat. Both of these aspects of medical care are dependent on another clinically opaque area of lupus: measuring disease activity. It is important for a patient to understand how this measurement is made and the way in which the results are used by physicians. The physician has to depend on some kind of objective tool in order to decide on a treatment plan–what is interesting is how much of disease activity measurement is dependent on patient reporting.
In an online medical journal, Clinical and Experimental Rheumatology Online, the difficulty of assessing disease activity in lupus is discussed. (Assessing Remission in Systemic Lupus Erythematosus). In this article, the author describes the importance of patient reporting in assessing disease severity. So, in effect, a patient’s sense of well being and the way they report that to the doctor has a bearing on how the doctor will decide to treat.
Most of us know how we feel; sometimes it is hard to judge, however, whether we feel worse today than we did a month ago, or a week ago. And it’s often hard to describe, if we do feel worse or better, exactly what the change is. And yet the fluctuations in our sense of how we are faring are essential to a doctor when it comes to designing a treatment plan.
Over the years, as assessment “indexes” have been developed, the weight given to patient input has varied. An assessment index is basically a list of factors a doctor checks off and rates; this list can include the results of objective tests (such as biopsies and blood work). There are many lupus assessment indexes with strange sounding names; among these are: PGA, SLEDAI, SELENA, SLAM, MEX-SLEDAI, and AMS-SLEDAI 2K. While not one of these is ideal for assessing disease activity, they can still be useful tools in helping a physician come to a treatment decision. They are also useful in assessing the effectiveness of new medications in clinical trials.
Benlysta (belimumab) offers a good example of how assessment indexes are used in clinical trials. According to an NIH article published in 2012, the SELENA-SLEDAI assessment index was used to determine if Benlysta use was of benefit to patients. Analysis of this assessment index showed that “compared with placebo, belimumab produced greater benefits regarding severe flares, corticosteroid use and health-related quality of life.” Another 2012 NIH article discussed not only the SELENA-SLEDAI index but also the PGA. Both showed that use of Benlysta resulted in better outcomes for patients.
Studies such as those done on Benlysta are repeated many times in different settings. Always there is an objective standard, such as the indexes mentioned above, by which researchers can compare the usefulness of the drug to other therapies. What the indexes show, in the case of Benlysta, is an improvement for a small percentage of patients who are experiencing a specific subset of lupus symptoms (lupus nephritis, for example, was not included in these studies). Because everyone in the medical community understands these indexes and how they are used, the results have significance for all physicians who treat lupus patients.
As patients, we should know about the assessment tools and understand what they mean in clinical practice. When we understand the factors that go into a doctor’s thinking, we can better cooperate in pursuing suitable treatment. We also can participate in decisions which may impact dramatically on our lives.
Some of the assessment indexes and what they mean:
PGA: Physicians Global Assessment
SELENA: Safety of Estrogens in Lupus
SLEDAI: SLE Disease Activity Index
A reference which discusses assessments indexes can be found in a book, Dubois’ Lupus Erythematosus, by Daniel J. Wallace and Bevra Hah. I viewed an excerpt of this book on Google Books