Survey of medical experts reveals opportunities to address organ damage risk with people living with lupus earlier in the course of their disease
- Survey examined healthcare professional (HCP) approaches to preventing organ damage – which impacts many people living with lupus within five years of diagnosis
- HCPs reported a need for earlier intervention and prevention in identifying risks and measuring disease activity in patients.
- HCPs report that COVID-19 pandemic caused delays in diagnosis and care.
MISSISSAUGA, ON – A global survey of healthcare professionals (HCPs) – which included Canadian medical experts - reveals the COVID-19 pandemic and medical complications prevented some people living with systemic lupus erythematosus (SLE) from getting optimal care in the past two years, increasing their risk for organ damage.
Organ damage, which occurs commonly in the kidneys, skin, and joints,[i] is a key determinant of poor long-term prognosis in SLE.ii Survey respondents shared that delays in care – such as those experienced during the pandemic – can be critical, as organ damage can occur in up to 50 per cent of people living with lupus within five years of diagnosis.[ii] Lupus flares can also increase the risk of organ damage, and Canadian HCPs reported that 12 per cent of their patients experienced an increase in flares compared to pre-pandemic.
The global survey of 648 rheumatologists, nephrologists and internal medicine specialists offers insight into the range of factors that, in addition to the pandemic, contribute to increased risk some lupus patients have for developing organ damage. It included patients with lupus nephritis, one of the most common complications of SLE, which consists of an inflammation of the kidneys that can lead to kidney failure.[iii]
While surveyed HCPs are familiar with the risk of organ damage and how fast it may occur in lupus patients, they also cited challenges in determining which patients are most at risk for organ damage: 39 per cent of Canadian respondents find it difficult to monitor/measure organ impact from SLE, and only two in five think it’s easy to identify which patients are at risk of organ damage.
According to the survey, more information about available treatments might help HCPs and patients to consider long-term treatment plans, balancing the need for rapid symptom relief with long-term treatment goals:
- Most Canadian HCPs (83 per cent) say that data showing the benefits of different therapies for patients at risk of organ damage would be helpful.
- Most (66 per cent) Canadian respondents say that the current standard of care (SOC) regimen (anti-malarial medicines, steroids and immunosuppressants) can sufficiently reduce the risk of long-term organ damage for most lupus patients. However, research shows that standard of care (SOC), which includes anti-malarial medicines, steroids and immunosuppressants, does not prevent organ damage in a significant number of patients and in fact, steroids may actually contribute to it.[iv],[v],[vi],[vii]
- 80 per cent of Canadian HCPs surveyed say that a lack of disease-modifying therapies makes it difficult to treat lupus, though separate research shows symptoms of lupus can be managed by disease-modifying treatments that disrupt the inflammatory process.[viii]
Marni Freeman, Country Medical Director, GSK Canada, said: “Organ damage is a very real risk for people living with lupus. The survey results highlight the importance of education about organ damage risk and the continued dialogue needed to align the short and long-term treatment goals. We are committed to ongoing research and scientific exchange on a proactive approach to lupus care.”
About the survey
The global HCP survey was conducted by Material on behalf of GSK between July and September 2022 among 648 HCPs across seven countries—Canada (n=41), China (n=100), France (n=102), Germany (n=102, Japan (n=100), Spain (n=100) and the United States (n=103).
The survey was designed to explore the attitudes and practices of HCPs in treating their patients with SLE, including those with lupus nephritis (LN), with a focus on topics related to disease modification in lupus, as well as organ damage.
Surveyed HCPs had a primary specialty of rheumatology, nephrology, or internal medicine, were board certified in their specialty and managed the treatment of SLE patients, including those with LN:
- HCPs in the US had a minimum of 15 SLE patients
- HCPs in Canada, China, Germany, and Spain had a minimum of 10 SLE patients
- HCPs in Japan and France had a minimum of 5 SLE patients
The HCPs surveyed were not employed or under contract with pharmaceutical companies, healthcare manufacturers, or government regulatory agencies.
The results of any sample are subject to sampling variation. The magnitude of the variation is measurable and is affected by the number of interviews and the level of the percentages expressing the results. In this particular study, the chances are 95 in 100 that a survey result does not vary, plus or minus, by more than 9.7 percentage points from the result that would be obtained if interviews had been conducted with all personas in the universe represented by the sample. The margin of error for any subgroups will be slightly higher.
About systemic lupus erythematosus and lupus nephritis
Systemic lupus erythematosus (SLE), the most common form of lupus, is a chronic, incurable, autoimmune disease associated with a range of symptoms that can fluctuate over time including painful or swollen joints, extreme fatigue, unexplained fever, skin rashes and organ damage. In lupus nephritis (LN), SLE causes kidney inflammation (swelling or scarring) of the small blood vessels that filter wastes in your kidney (glomeruli).[ix]
LN can lead to end-stage kidney disease, which requires kidney dialysis or a transplant. Despite improvements in both diagnosis and treatment over the last few decades, LN remains an indicator of poor prognosis for people living with lupus.[x],[xi] Manifestations of LN include proteinuria, elevations in serum creatinine and the presence of red and white blood cells in the urine.
GSK is a science-led global healthcare company. For further information, please visit ca.gsk.com
[i] Kyttaris VC. Systemic lupus erythematosus: from genes to organ damage. Methods Mol Biol. 2010;662:265-83. doi: 10.1007/978-1-60761-800-3_13. PMID: 20824476; PMCID: PMC3153363.
[ii] Urowitz MB, Gladman DD, Ibañez D, Fortin PR, Bae SC, Gordon C, Clarke A, Bernatsky S, Hanly JG, Isenberg D, Rahman A, Sanchez-Guerrero J, Wallace DJ, Ginzler E, Alarcón GS, Merrill JT, Bruce IN, Sturfelt G, Nived O, Steinsson K, Khamashta M, Petri M, Manzi S, Ramsey-Goldman R, Dooley MA, van Vollenhoven RF, Ramos M, Stoll T, Zoma A, Kalunian K, Aranow C. Evolution of disease burden over five years in a multicenter inception systemic lupus erythematosus cohort. Arthritis Care Res (Hoboken). 2012 Jan;64(1):132-7. doi: 10.1002/acr.20648. PMID: 21954226.
[iii] National Institute of Diabetes and Digestive and Kidney Diseases. Lupus and Kidney Disease (Lupus Nephritis). Available at www.niddk.nih.gov/health-information/kidney-disease/lupus-nephritis.
[iv] Gladman DD, Urowitz MB, Rahman P, et al. Accrual of organ damage over time in patients with systemic lupus erythematosus. J Rheumatol 2003;30(9):1955-1959.
[v] Sung YK, Hur NW, Sinskey JL, et al. Assessment of damage in Korean patients with systemic lupus erythematosus. J Rheumatol 2007;34(5):987-991
[vi] Segura BT, Bernstein BS, McDonnell T, et al. Damage accrual and mortality over long-term follow-up in 300 patients with systemic lupus erythematosus in a multi-ethnic British cohort. Rheumatology (Oxford) 2020;59(3):524-533.
[vii] 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.
[viii] van Vollenhoven R, Askanase AD, Bomback AS, et al Conceptual framework for defining disease modification in systemic lupus erythematosus: a call for formal criteria Lupus Science & Medicine 2022;9:e000634. doi: 10.1136/lupus-2021-000634
[ix] National Kidney Foundation, Lupus and Kidney Disease (Lupus Nephritis). Available at www.kidney.org/atoz/content/lupus
[x] Gordon C, Hayne D, Pusey C, et al. European Consensus Statement on the Terminology used in the Management of Lupus Glomerulonephritis. Lupus 2009;18:257-26.
[xi] Waldman M and Appel GB. Update of the Treatment of Lupus Nephritis. Kidney International 2006;70:1403-1412.