Patients with systemic lupus erythematosus (SLE) said they still suffered significant pain and fatigue, even though they reported high rates of satisfaction with their therapies.
A new survey of patients with systemic lupus erythematosus (SLE) shows people with the condition are generally happy with their treatments, though many find their therapies burdensome and most said they still suffer residual pain and fatigue.
The report, published in Rheumatology and Therapy, is based on a survey of 500 adults from the United States with SLE who took a 104-question online survey about their treatments, symptoms, and goals.
The data showed patients were grateful for their therapies, even though those therapies often came with challenges. The highest rates of satisfaction were among patients treated with the biologics rituximab (Rituxan; 94% satisfaction), and belimumab (Benlysta; 86%). Nearly three-quarters (71%) of patients on immunosuppressants were satisfied, 65% of patients on corticosteroids were satisfied, and 55% of patients taking antimalarial medications reported satisfaction.
Corresponding author Monica A. Hadi, PhD, of the research firm Evidera, said the types of drugs patients reported using were mostly similar to those in other studies.
“Unexpectedly in our study, antimalarial use was less frequent than reported in other surveys,” she and colleagues wrote.
Yet, the rates of satisfaction for particular therapies were similar.
“The current study also showed that participants were more satisfied with biologics (belimumab and rituximab) and relatively less satisfied with corticosteroids and immunosuppressants, even though biologics were considered more burdensome and were generally associated with a lower HRQoL [healthcare-related quality of life] compared to non-biologic therapies,” they wrote.
Both biologics presented some issues, patients reported, with 63% to 67% saying the treatments were “burdensome” or “very burdensome.” Less than half of patients taking the other therapies—corticosteroids, immunosuppressants, and antimalarials—labeled them burdensome, 48%, 49%, and 30%, respectively.
When asked why the therapies were burdensome, the respondents cited several reasons, including inconvenient administration (such as intravenous administration), slow onset of effect, routine monitoring, and complications.
“These results highlight the multifactorial etiology of treatment satisfaction which could also be impacted by individual expectations in relation to past medication experiences,” the authors reported.
The majority of patients were found to be substantially impaired in terms of work productivity and activity, a finding that was true even among those patients who said they were satisfied with their treatment. The data showed residual pain and fatigue were common among survey respondents, and that relieving those symptoms, along with limiting the frequency or severity of flares, was seen as the most important treatment goals. In most cases (76.6%), patients said their goals for therapy were “very” or “somewhat” in alignment with their physicians’ goals. Yet, it appears that some of that alignment may be coincidental; 63% of patients said their doctor had not asked about their treatment goals in the past 3 months. Sixteen percent of patients said their goals did not match their physicians’ goals.
“In the survey participants who said their physician had asked them about their treatment goals recently were generally satisfied with their treating physician and their own involvement in decision making,” they said.
The authors said these data underscore the importance of close physician/patient collaboration around goals and decision-making.
Birt JA, Hadi MA, Sargalo N, et al. Patient experiences, satisfaction, and expectations with current systemic lupus erythematosus treatment: Results of the SLE-UPDATE survey. Rheumatol Ther. 2021 Sep;8(3):1189-1205. doi: 10.1007/s40744-021-00328-6