Rare Disease - Episode 11
Even with several metric reports available, Michelle Petri, MD, MPH, explains that measuring the outcomes of systemic lupus erythematosus (SLE) is difficult.
Dr Petri explains that measuring outcomes is challenging because multiple organ sites are involved; and because the disease presents in many different ways, healthcare professionals often utilize available indexes as research tools.
Instead of referring to a single guideline when making treatment decisions, healthcare professionals assess these metrics in combination.
Additionally, a correct diagnosis often does not occur until after the disease has become full-fledged. Generally, a patient first seeks the opinion of his or her primary care physician. Often, by the time a correct diagnosis is made with a specialist such as a rheumatologist, the disease has caused permanent damage. Therefore, Dr Petri believes it is necessary to address this issue by enforcing rapid referral to academic rheumatology practices.
Furthermore, Maria Lopes, MD, MS, explains that another challenge to the treatment of SLE, even with the availability of national guidelines, is the overall cost of treatment. Dr Petri agrees and explains that the approval of Benlysta (belimumab), the first biologic approved for lupus, is very expensive due to results of clinical trials that revealed only a 10% difference in outcomes between the group treated with Benlysta and the standard-of-care group.