Lupus is under-diagnosed
The recent NKF/LRA survey also found that lupus is under-diagnosed by all specialties and lupus nephritis (LN) may be as well. In fact, only half of the patients in the survey with lupus nephritis were known to have SLE at the time of their lupus nephritis diagnosis. The findings noted that physicians seem to be defaulting to a heavy reliance on patients to spark lupus and lupus nephritis screening. [xxxii]
To improve diagnosis, the American College of Rheumatology provides guidance for screening for lupus nephritis here.
Barrier to communications among healthcare team
One of the most significant barriers to better disease management is a lack of communication among the medical team, in addition to disparate diagnostic and treatment approaches by primary care providers, rheumatologists and nephrologists. Patients and physicians both report wanting earlier treatment interventions and informed treatment approaches that will allow for better long-term management of LN disease activity. [xxxiii]
Therefore, patients and physicians must work collaboratively to create an open line of communication across a patient’s entire care team. Every patient’s medical team may look different based on their unique condition. Rheumatologists may be coordinating with nephrologists, or a dermatologist may share timely updates with their patient’s general practitioner. Regardless of the makeup of a patient’s care team, maintaining transparency and consistent communication is key to providing patients with the best possible care.
Aligning on a treatment plan [xxxiv]
Lupus nephritis management takes widely different forms and there is disagreement about who should lead. In the recent survey, the NKF and LRA found that the majority of physicians were not aligned on who was leading the patient’s care team. Some doctors felt it should be the rheumatologist leading, while others felt it should be the nephrologist. While doctors surveyed were aligned that primary care physicians were not leading the patient care team, patients with LN who self-identified as African American or Hispanic noted that their care was in fact being managed by their primary care physician.[xxxv]
To address these issues, the NKF and LRA suggest a number of actions be taken, including:[xxxvi]
- Facilitate dialogue between nephrologists and rheumatologists on management of lupus nephritis.
- Having discussions within a task force or other special group to clarify responsibilities and find ways to help address the under-diagnosis.
- Encourage the implementation of systems to support and prompt physicians, such as a surveillance process, alerts within patient EMR, and treatment guidelines and algorithms.
Determining a treatment plan shortly after diagnosis is critical to reduce kidney damage for lupus patients,[xxvi] with physicians working together to review the guidelines and come to a consensus on who will lead the patient team. An understanding of the latest treatment developments in LN care is an essential place to start these dialogues. Here are a few resources the healthcare team can use:
- American College of Rheumatology Guidelines
- American Journal of Kidney Disease and National Kidney Foundation Core Curriculum on Treating LN
(GSK is not affiliated with these organizations.)Back to top
Guiding patient navigation
Navigating treatment plans can be overwhelming for patients, especially since they may be working with several specialists. To ensure patients feel comfortable and informed, physicians may consider these tips:
- Encourage patients to keep records of their symptoms, tests, and test results so they can share them with their entire care team.
- Ask patients if they have any questions, no matter how insignificant they may seem.
- If English is not the patient’s preferred language, encourage them to ask for an interpreter or bring an English-speaking family member to their visits.
In addition, physicians can share helpful resources such as these:
- Important Questions when Diagnosed with Lupus (Lupus.org)
- Meet Your Lupus Nephritis Team (AKF)
- Pocket Guide to Managing Kidney Disease (AAKP)
(GSK is not affiliated with these organizations.)Back to top
Reducing risk of disease progression
The best way to slow the progress of lupus is through early diagnosis and treatment. Diagnosing patients earlier means starting treatment and helping them understand their triggers sooner rather than later. Treatment strategies can help control symptoms that may contribute to long-term organ damage.[xxxvii]
It’s important to encourage patients to share any symptoms they may be experiencing to determine if they may have kidney disease caused by their lupus. Reducing kidney flares may help reduce the potential for significant organ damage, the need for dialysis, or even kidney failure.[xvi]
To learn more about the importance of preventing organ damage progression in lupus, physicians can visit: www.thesmolderingtruth.com/.Back to top
Giving patients hope and linking them with fellow patients
While a lupus diagnosis comes with many challenges, patients should know that they are not alone in their disease journey. Healthcare professionals can share resources with their patients in finding additional support, including:
- usinlupus.com – Patients can find information and resources about living with lupus and tips for connecting with others about their condition
- Us in Lupus Facebook Page
Go behind the science and read: Raising the Bar for Lupus Awareness & Advancement - It’s Personal at GSK
- Visit for a list of: Advocacy Organizations
Lupus: Make the Link
A lupus resource developed for media, how it can progress to lupus nephritis and the disconnects in understanding and treatment.
Patient education is key
For autoimmune diseases such as systemic lupus erythematosus (SLE), early and accurate diagnosis is linked to improving outcomes.
[xvi] Jolly M. et al. Lupus. 2018; 27(2):257–64
[xxvi] Doria A, Gatto M, Zen M, et al. Optimizing outcome in SLE: treating-to-target and definition of treatment goals. Autoimmun Rev. 2014;13(7):770-777.
[xxxii] National Kidney Foundation &Lupus Research Alliance New York, New York, “Awareness And Education Needs For Lupus/Lupus Nephritis: Summary Survey Of Opinions And Practices Of Physicians And Patients a Report Of Significant Findings” September 2020.
[xxxiii] National Kidney Foundation &Lupus Research Alliance New York, New York, “Awareness And Education Needs For Lupus/Lupus Nephritis: Summary Survey Of Opinions And Practices Of Physicians And Patients a Report Of Significant Findings” September 2020.
[xxxv] National Kidney Foundation &Lupus Research Alliance New York, New York, “Awareness And Education Needs For Lupus/Lupus Nephritis: Summary Survey Of Opinions And Practices Of Physicians And Patients a Report Of Significant Findings” September 2020.
[xxxvi] National Kidney Foundation &Lupus Research Alliance New York, New York, “Awareness And Education Needs For Lupus/Lupus Nephritis: Summary Survey Of Opinions And Practices Of Physicians And Patients a Report Of Significant Findings” September 2020.