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Patient education is key

For autoimmune diseases such as systemic lupus erythematosus (SLE), early and accurate diagnosis is linked to improving outcomes. However, since the symptoms of SLE tend to resemble many other conditions, the disease can be difficult to diagnose in a timely manner.[xi]

Disease education gaps impact patient care

SLE is the most common form of lupus. Worldwide, irreversible organ damage will occur in up to 50% of SLE patients within five years of diagnosis and is associated with a poor long-term prognosis and early mortality.[xii],[xiii],[xiv] Across the globe, approximately 40% of SLE patients develop lupus nephritis (LN), inflammation of the kidneys caused by SLE, and approximately 20% of LN patients will develop end-stage kidney disease (ESKD) after 10 years.[xv] Managing the long-term effects of LN, including ESKD and transplant, is costly; patients with LN tend to have a worse quality of life than non-LN SLE patients. [xvii]

This is why increasing disease education around lupus among patients and physicians may have a significant impact on patient care.

Learning more about the basics of lupus nephritis

The kidneys are important organs that play a number of roles in the body. In about 40% of adults who live with lupus, the disease can cause the immune system to attack the kidneys, which may lead to damage.[xvii] To learn more about LN and how it impacts the body, click here: https://www.usinlupus.com/basics-of-lupus/lupus-nephritis

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Which doctors should lupus patients talk to? And what about?

Since SLE affects people differently, patients’ treatment teams may vary as well. Many people with SLE see a rheumatologist, who treats the immune system, joints and muscles. When lupus affects the kidneys due to autoimmune inflammation, patients are often referred to a nephrologist.xi

Patients looking for guidance on which doctors to speak to and what to discuss will find helpful tips here: https://www.usinlupus.com/talking-about-lupus/manage-your-healthcare-team

It is critical that everyone on a patient’s treatment team has up-to-date information about the patient’s health and is aware of the other doctors they are seeing. The more information patients share about their health and family’s health history, the better doctors can coordinate and optimize their care. For helpful tips on making the link with their doctors, patients should visit: https://www.usinlupus.com/talking-about-lupus/talk-with-your-doctor

Before meeting with their physicians, patients may also find it helpful to download a discussion guide to start the conversation. These organizations have created useful resources:

(GSK is not affiliated with these organizations.)

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Understanding the risk for developing LN

In cases of SLE, organ damage begins to accrue early, with as many as 50% of patients showing evidence of irreversible damage within 5 years of SLE diagnosis.[xviii],[xix],[xx] Across the globe, approximately 40% of SLE patients develop lupus nephritis (LN), inflammation of the kidneys caused by SLE, and approximately 20% of LN patients will develop end-stage kidney disease (ESKD) after 10 years.[xxi] Early diagnosis and treatment, as well as understanding disease triggers, may help slow disease progression and reduce long-term organ damage. To learn more about symptoms and triggers, visit here: https://www.usinlupus.com/symptoms-in-depth/kidney-issues/ and for information on tests doctors may order, visit here: https://www.kidneyfund.org/prevention/tests-for-kidney-health/

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The role of lifestyle changes

Understanding the link between managing lupus and stress is essential. There are several lifestyle changes that patients can make to help manage their lupus and lower the stress they feel. Some of these lifestyle changes may include: changes in nutrition, stress relief, exercise, getting more sleep, sun safety and symptom tracking. Additional information on making lifestyle changes can be found here: https://www.usinlupus.com/living-with-lupus/. It can also be beneficial to seek professional support. If a patient wants to talk to a professional, they should ask a member of their treatment team for a referral to a mental health therapist, counselor, or a social worker. 

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The role of self-care

Throughout a patient’s journey with LN, it’s important they remember that they are their biggest advocate. In addition to making a link with their healthcare team to determine a proper treatment plan, it’s important to prioritize and practice methods of self-care. A recent study found that incorporating self-care activities – such as holistic ways to manage symptoms – into patients’ routines improved quality of life.[xxii]

A large part of practicing self-care includes living with lupus unapologetically. While some people may be ashamed of their chronic conditions, the best way to lessen the stigma around diseases such as lupus and lupus nephritis is by spreading awareness. Prioritizing one’s mental health and well-being is just as essential as adhering to a treatment plan. Here is a terrific article about being unapologetic.

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Understanding treatment options

Lupus is known to shift between chronic activity, occasional relapses and long-term quiescence. Waxing and waning over time, its very nature makes it difficult to predict which patients will experience symptom flares…and when… [xxiv],[xxv]

That’s a vital point to remember, because flares—along with persistent disease activity and the prolonged, cumulative use of corticosteroids—can all contribute to permanent organ damage.[xxvi​],[xxvii],[xxviii],[xxix],[xxx]

While there is no known cure for lupus nephritis, there are treatments available to help control disease activity and improve symptoms. Since no single treatment strategy works for every patient, it’s important to understand the available options. Gaining a better understanding about treatment options can help patients link-up with their doctor to create the right treatment plan for them.

For more information about treatment options, patients can visit: https://www.usinlupus.com/basics-of-lupus/treatment-options

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What does adherence mean and how does it impact patient health?

Adherence to treatment occurs when a patient follows their healthcare professional’s recommendations regarding diet, exercise and medication, which is agreed upon between a patient and physician.

Nonadherence to a patient’s treatment plan in diseases such as lupus can lead to unwanted consequences in the short-term and long-term and can exacerbate or increase disease activity.xxiii It’s important for patients to understand the link between following their treatment plan and achieving treatment goals.

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[xi] https://www.usinlupus.com/basics-of-lupus/common-lupus-symptoms

[xii] Chambers SA, et al. Rheumatology. 2009;48(6):673-5.

[xiii] Urowitz MB, et al. Arthritis Care Res (Hoboken). 2012;64(1):132-7.

[xiv] Segura BT, et al. Rheumatology. 2020;59(3):524-33.

[xv] Hanly JG, et al. Rheumatology (Oxford). 2016;55(2): 252-62.

[xvi] Jolly M. et al. Lupus. 2018; 27(2):257–64

[xvii] https://www.usinlupus.com/basics-of-lupus/lupus-nephritis

[xviii] Urowitz MB, Gladman DD, Ibañez D, et al. Evolution of disease burden over five years in a multicenter inception systemic lupus erythematosus cohort. Arthritis Care Res (Hoboken). 2012;64(1):132-137.

[xix] Chambers SA, Allen E, Rahman A, Isenberg D. Damage and mortality in a group of British patients with systemic lupus erythematosus followed up for over 10 years. Rheumatology (Oxford). 2009;48(6):673-675.

[xx] Gladman D, Ginzler E, Goldsmith C, et al. The development and initial validation of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage index for systemic lupus erythematosus. Arthritis Rheum. 1996;39(3):363-369. 

[xxi] Hanly JG, et al. Rheumatology (Oxford). 2016;55(2): 252-62.

[xxii] Kusnanto, K., Sari, N., Harmayetty, H., Efendi, F., & Gunawan, J. (2018). Self-care model application to improve self-care agency, self-care activities, and quality of life in patients with systemic lupus erythematosus. Journal of Taibah University Medical Sciences, 13(5), 472–478. https://doi.org/10.1016/j.jtumed.2018.07.002

[xxiii] https://www.usinlupus.com/basics-of-lupus/treatment-options

[xxiv] Steiman AJ, Urowitz MB, Ibanez D, et al. Prolonged clinical remission in patients with systemic lupus erythematosus. J Rheumatol. 2014;41(9):1808-1816.

[xxv] Barr S, Zonana-Nacach A, Magder LS, Petri M. Patterns of disease activity in systemic lupus erythematosus. Arthritis Rheum. 1999;42(12):2682-2688.

[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.

[xxvii] Lopez R, Davidson JE, Beeby MD, et al. Lupus disease activity and the risk of subsequent organ damage and mortality in a large lupus cohort. Rheumatology (Oxford). 2012;51(3):491-498.

[xxviii] Gladman D, Urowitz M, Rahman P, et al. Accrual of damage over time in patients with systemic lupus erythematosus. J Rheumatol. 2003;30(9):1955-1959.

[xxix] Stoll T, Sutcliffe N, Mach J, et al. Analysis of the relationship between disease activity and damage in patients with systemic lupus erythematosus—a 5-yr prospective study. Rheumatology (Oxford). 2004;43(8):1039-1044.

[xxx] Urowitz MB, Gladman DD, Ibañez D, et al. Evolution of disease burden over five years in a multicenter inception systemic lupus erythematosus cohort. Arthritis Care Res (Hoboken). 2012;64(1):132-137.

[xxxi] https://pubmed.ncbi.nlm.nih.gov/29427555/