Survey shows education and communication gaps about lupus nephritis
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Results of surveys conducted by the National Kidney Foundation and Lupus Research Alliance show significant gaps in education and communication among patients and physicians about lupus nephritis care.
“Half of all people with LN [lupus nephritis] do not realize that, by definition, they also have lupus despite that LN ... is one of the most common and dangerous complications of the disease,” the NKF stated in a press release. “Both health care professionals and patients report that for half of patients, diagnosis with lupus nephritis came before lupus was identified.”
The NKF survey, conducted in the spring, queried 303 nephrologists, rheumatologists and primary care physicians. A second survey was answered by 551 adults with lupus, lupus nephritis and chronic kidney disease, alone or in any combination.
Questions in the surveys focused on diagnosis, adherence to physicians’ recommendations, care teams, preferred ways to receive information and barriers to effective treatment, according to the release.
“Recognizing their need for more knowledge about LN, over three-quarters of patients want information about treatment options, importance of treatment, risk factors for LN and how to reduce them, need for tests and what’s involved, as well as a basic understanding of LN,” the NKF stated in the release. “Health care professionals agree; 79 percent say not enough patient education on LN is a barrier to successful treatment at least some of the time.”
Patients and physicians disagreed on the most useful forms of educational materials, according to the NKF. Health care professionals indicated that the three most useful educational resources for patients are brochures (56%), support groups (52%) and special website/web page (46%).
“[Although] health care professionals were not given this choice of an answer, in the patient survey, half (47%) of patients said their first choice for information is to talk one-on-one with a doctor. Only 16 percent of patients cited support groups as a preferred source for information,” the NKF stated in the release.
“These data suggest that greater education and awareness are critically needed to improve care, particularly as new therapies for lupus nephritis, now being reviewed by the U.S. Food & Drug Administration, become available, “Lupus Research Alliance (LRA) President Kenneth M. Farber said in the release. “The LRA and NKF are collaborating on these projects because improved coordination among health care professionals and patients is clearly needed.”
A webinar sponsored by the NKF and Lupus Research Alliance and titled “Systemic lupus erythematosus (SLE) – Arming clinicians with meaningful solutions,” will be held at 5 p.m. EST Dec. 9. The webinar will focus on strategies for screening and assessing SLE severity, informing treatment decisions and long-term management. More information is available here.
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