Approximately one-third of patients with systemic lupus erythematosus (SLE) admit to self-managing their corticosteroid medication without the consent of their rheumatologist or healthcare provider (HCP).
Conducted by Cello Health Insight, a healthcare market research firm, EnABLE was designed to identify potential discrepancies between HCPs and patients as to what concerns lupus treatment and management, and identify existing barriers to improve patient care.
The two-phase survey included an initial qualitative analysis that involved 22 patients from the U.S., Italy, and Spain, and a second quantitative phase with 261 lupus patients and 311 HCPs from the U.S., Europe, Japan, and Brazil. The participants took part in a series of small focus groups and in-depth interviews concerning corticosteroid use and lupus management.
Among HCPs, 37 percent did not agree that long-term management is as important as treating immediate symptoms when caring for patients with persistently active disease. And approximately 60 percent of rheumatologists are not aware that nearly half of lupus patients develop organ damage within five years of diagnosis.
“For many people, lupus can be managed successfully with early diagnosis and expert medical care, but a balance needs to be struck – between treating symptoms as they evolve and proactively reducing underlying disease activity and preventing flares – if the risk of long-term organ damage is to be reduced,” Alex Liakos, MD, of Global Medical Affairs at GSK, said in a press release.
These results were in accordance with most HCPs’ approach regarding the use of corticosteroids. While the long-term use of corticosteroids is associated with irreversible organ damage, the majority of HCPs considered 10 mg per day, which is higher than the clinical threshold of 7.5 mg/day, as a low dose. Also, 58 percent of HPCs defined 20 mg/day or higher as a high corticosteroid dose.
Similarly, 53 percent of patients said they rely heavily on corticosteroids to manage the difficult periods of their disease. And a third of patients reported that they commonly increase their oral dosage without their healthcare provider’s consent, making six increases a year, on average.
The behaviors may be contributing to the high rates of long-term toxicity and organ damage caused by standard lupus therapy. And while reductions of as little as 1 mg per day are known to reduce the risk for future organ damage, 61 percent of HCPs said they were not planning to reduce corticosteroid prescriptions. Eight percent were expecting to increase the dose to care for patients with persistently active lupus.
“These results highlight the need for better education around the appropriate use of corticosteroids and the long-term impact of the disease, particularly given that half of patients suffer irreversible organ damage within five years of being diagnosed,” Liakos said. “EnABLE suggests that taking a more holistic, proactive approach to treating the disease would improve the overall outcomes for people with SLE.”
GSK has created several U.S. and global patient-focused resources to provide support to patients and improve care, called UsinLupus.com and Living with Lupus. The company has also developed educational resources and tools, available at TalkSLE.com, to help HCPs manage lupus.