A call to action: setting the future care principles for people living with Systemic Lupus Erythematosus

The case for change: the debilitating burden of lupus1

We understand more about the burden of lupus than ever before, with many projects underway across the world looking to define the barriers faced by people living with lupus. A complex, chronic autoimmune disease, lupus causes the immune system to attack heathy tissue and affects an estimated 5 million people worldwide.2 Most people living with lupus have systemic lupus erythematosus (SLE), and experience systemic inflammation of multiple organs,3,4 which can cause many health problems including joint pain, skin rashes or lesions and debilitating fatigue.4-7

Most people living with SLE experience periods of worsening symptoms, known as flares, which are associated with increased risk of long-term damage to organs.8 Every flare a patient experiences regardless of severity, leads to increased risk of organ damage.9 In particular for those with moderate to severe disease, this significantly impacts use of health care services, leading to increased emergency hospital visits and health care costs.10 Up to 80 percent of people living with lupus are exposed to corticosteroids within five years of treatment, and will also use a median of five different medications to manage their symptoms. Corticosteroids can provide rapid symptom relief.11 However, long-term use of corticosteroids used in high doses, has been associated with irreversible organ damage, poor quality of life and other side effects.12,13 Despite this, there have been few new treatments over the past 60 years and patients are in urgent need of access to all available options.14

Lupus Europe’s 2020 Living with Lupus survey revealed the huge impact that SLE symptoms have on quality of life. Approximately half of respondents felt SLE had impacted their studies or employment status, as well as their ability to perform normal daily activities, with 58 percent of people reporting that lupus has an impact on their career.15

Building consensus

Because of the work of the patient advocacy and clinician community, including the Lupus Foundation of America’s ALPHA Project, the World Lupus Federation and Lupus Europe and others, we know that the challenges facing people living with SLE extend across a patient’s lifetime. People with lupus can wait an average of three-and-a-half years from the time they notice symptoms until they receive a formal diagnosis.16 Lupus can be challenging to diagnose because many of its main symptoms can be mistaken for symptoms of other diseases, making it difficult and time-consuming for patients to access the care they need.17-19

In the last decade, our understanding of the science and care of lupus has improved dramatically. As a result, new guidelines for how patients can be managed and treated have been developed, through the British Society of Rheumatology guideline (2017)20 and the European League Against Rheumatism (2019).21 However, due to the complex nature of lupus, there is variation in clinical practices and therefore in the care and treatment from patient to patient, around the world.22

Despite differences in care worldwide, the core challenges facing people living with lupus remain the same. There is exciting work ongoing to address this — from the ALPHA Project to the European Reference Network (ERN) ReCONNET, which aim to identify and address the barriers to accessing treatment and create a network of best practice care through the development of data registries and patient pathways, respectively.23,24 The recognition of SLE within the ReCONNET project demonstrates how Europe is helping lead the way in tackling some of the barriers to high-quality care.  

This presents us with a unique opportunity. As we mark Lupus Awareness Month, and World Lupus Day, we want the global lupus community to join us in advocating for a better future for people living with lupus. We need to define the standard of care that people living with lupus deserve, which tackles the challenges across the patient pathway.

Despite differences in care worldwide, the core challenges facing people living with lupus remain the same.

What quality care should look like

We need to reduce the time to diagnosis, educating patients and clinicians alike on the signs and symptoms of lupus, and minimizing delays that can cause increased organ damage and significantly impact people’s quality of life. Once they have received a diagnosis, we need to ensure that lupus patients have access to multidisciplinary and, where appropriate, specialist care, improving referrals to lupus specialists and taking advantage of advances in digital and telehealth. This care needs to consider patient preference, addressing their specific requests to improve their quality of life, and all lupus patients should receive a care plan that works for them. Following a historical lack of innovation in developing new treatment options, we now need to ensure that guidelines and health systems enable clinicians to prescribe all available treatments and those most appropriate for their patients to reduce disease activity, as well as minimize the use of corticosteroids.

There is a lot we can learn from other disease areas. The management of HIV has been transformed by access to multidisciplinary care.25 Thanks to treatment innovation and improvements in care pathways, the use of corticosteroids in rheumatoid arthritis has reduced significantly.26,27 To achieve optimal care in lupus, health systems should implement new care pathways that minimise the gaps in access to care and treatment, reducing the variation and fragmentation that lupus patients currently experience.

We need to reduce the time to diagnosis, educating patients and clinicians alike on the signs and symptoms of lupus.

We want to support and collect insights from people living with lupus around the world to create a standard for high-quality lupus care. In doing so, we can empower the millions of people living with lupus to demand the care they deserve. It is time to set the bar for what high-quality care looks like for lupus. We stand ready to listen and collaborate with the global lupus community to chart the best path forward.

Note on development process

The above ‘Call to Action’ article was initiated by AstraZeneca to start a debate around what high-quality lupus care looks like from the patient’s perspective and invite the wider advocacy community to support our activity. These principles were debated and refined during a virtual discussion held on March 21 2022, organized and funded by AstraZeneca. Four academic, patient organization and professional group experts discussed the value of establishing a ‘Call to Action’, as a potential starting point for discussions on how to improve lupus care.

References

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