Survey Shows Education and Communication Gaps in Lupus Nephritis Care

1 in 2 Lupus Nephritis Patients Don’t Know They Have Lupus

New York, NY– December 7, 2020—Significant gaps in education and communication among patients and physicians pose barriers to lupus nephritis (LN) care, according to results of two companion surveys conducted by the National Kidney Foundation (NKF) and the Lupus Research Alliance (LRA).  

Half of all people with LN do not realize that, by definition, they also have lupus despite that LN, inflammation of the kidneys, is one of the most common and dangerous complications of the disease. Both healthcare professionals and patients report that for half of patients, diagnosis with lupus nephritis came before lupus was identified.  

Conducted in spring 2020, one survey queried healthcare professionals that included 303 nephrologists, rheumatologists and primary care physicians, while the other was answered by 551 adults with lupus, lupus nephritis (LN) and chronic kidney disease (CKD), alone or in any combination. Similar questions between the two surveys focused on diagnosis, adherence to doctors’ recommendations, care teams, preferred ways to receive information and barriers to effective treatment. 

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.  Healthcare professionals agree; 79 percent say not enough patient education on LN is a barrier to successful treatment at least some of the time. However, the two groups disagree on the most useful forms of educational materials. Healthcare professionals believe that the top three most useful educational resources for patients are brochures, support groups, and special website/web page (56%, 52%, 46% respectively).  While healthcare 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 results also strongly suggest the need for more of a multidisciplinary approach to treatment with coordination among rheumatologists, nephrologists and primary care physicians.  Lupus can attack any organ in the body; therefore, coordinated care is essential to monitor and manage the disease affecting other areas of the body. While rheumatologists are more likely than nephrologists to support a collaborative team approach to managing LN, less than one third of them and five percent of nephrologists report this level of coordination in their practice.  The two groups differ on who should lead LN management; 39 percent of nephrologists say their specialty should handle LN compared with 45 percent of rheumatologists say they should be leading care.


Other Key Findings:

  • Healthcare professionals agree that lupus is under-diagnosed by all specialties, and LN may be too.
  • Patients and professionals agree that available medications are the number one barrier to effective treatment; however, while most patients report following doctors’ orders, healthcare professionals consider patient compliance a barrier to treatment success 87 percent of the time.
  • Patients who self-identify as African American or Hispanic with LN are more likely to be managed by a primary care physician than either specialist; yet almost none of the physicians surveyed think that LN is being treated by primary care physicians.

LRA President Kenneth M. Farber notes, “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. The LRA and NKF are collaborating on these projects because improved coordination among health care professionals and patients is clearly needed.  While lupus nephritis is the most common complication, lupus can affect virtually every part of the body and change over time.”

Affecting about half of all people with lupus, LN causes inflammation (swelling or scarring) of the small blood vessels that filter wastes in the kidney (glomeruli).  

“Lupus is an autoimmune disease that turns the immune system against the body, causing inflammation that can harm organs and tissues, like kidneys,” said Joseph Vassalotti, MD, Chief Medical Officer of National Kidney Foundation. “About half of all Americans living with lupus will develop lupus nephritis that generally requires a kidney biopsy to establish the diagnosis and to determine the severity to guide individualized treatment options.”  

These results confirm the need for both healthcare provider and public education, which the two organizations are addressing with a free continuing medical education course for healthcare professionals about ways to better diagnose and improve outcomes for patients with systemic lupus erythematosus (SLE) and lupus nephritis. The live webinar titled Systemic Lupus Erythematosus (SLE) – Arming Clinicians with Meaningful Solutions will be held on December 9, 2020 at 5:00 PM ET. This live webinar will focus on strategies for screening and assessing SLE severity, informing treatment decisions, and long-term management. Register here

Additional education and support materials will be developed in the coming year, to address critical gaps in knowledge identified by both patients and healthcare professionals.  

Results from the survey also point to a need for a greater communication among all healthcare professionals caring for patients with lupus and lupus nephritis, particularly primary care, rheumatology and nephrology. At the time of lupus nephritis diagnosis, only 43% of patients were known to have lupus,. Future initiatives are needed to address this critical need to promote a multidisciplinary treatment approach that manages the many complications of lupus as it can damage virtually any organ or tissue. 


Lupus and Lupus Nephritis Facts

Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90% of people with lupus are women; lupus most often strikes during the childbearing years of 15-45. People of African American, Hispanic, American Indian and Asian descent are two to three times at greater risk than White Americans. In lupus, the immune system, which is designed to protect against infection, creates antibodies that can attack any part of the body including the kidneys, brain, heart, lungs, blood, skin, and joints. Inflammation of the kidneys, lupus nephritis, is one of the most common and dangerous complications of lupus, affecting about five in 10 adults and eight of 10 children with lupus.  


Kidney Disease Facts

In the United States, 37 million adults are estimated to have chronic kidney disease—and approximately 90% don’t know they have it. One in three American adults are at risk for chronic kidney disease. Risk factors for kidney disease include: diabeteshigh blood pressureheart diseaseobesity, and family history. People of African American, Hispanic, American Indian, Asian, or Pacific Islander descent are at increased risk for developing the disease. African Americans are almost 4 times more likely than White Americans to have kidney failure. Hispanics are 1.3 times more likely than non-Hispanics to have kidney failure.


About the Lupus Research Alliance

The Lupus Research Alliance aims to transform treatment while advancing toward a cure by funding the most innovative lupus research in the world. The organization’s stringent peer review grant process fosters diverse scientific talent who are driving discovery toward better diagnostics, improved treatments and ultimately a cure for lupus.  Because the Lupus Research Alliance’s Board of Directors fund all administrative and fundraising costs, 100% of all donations goes to support lupus research programs. Visit for more information about lupus and lupus nephritis.


About the National Kidney Foundation

The National Kidney Foundation (NKF) is the largest, most comprehensive, and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the U.S. For more information about NKF, visit