The lupus community is calling on healthcare systems to improve care for people living with lupus. Better outcomes with lupus are possible if healthcare systems ensure that everyone with the disease receives a timely diagnosis and access to the right care and treatment. As global advocates, we believe it is essential to raise the level of awareness and understanding among patients, caregivers, healthcare professionals, policymakers and the public about the impact of lupus and opportunities to reform patient care. Our vision is that all people living with lupus receive the right care at the right time.
Representatives of the World Lupus Federation and Lupus Europe along with seven healthcare professionals from across the globe discussed the value of establishing a Patient Charter as a potential starting point for discussions on how to reform care for patients with lupus. The Charter to Improve Care for Lupus was initiated by this group, and supported by AstraZeneca, with the aim to set a standard for what people with lupus should expect from their care.
These expectations are in line with the current best practice understanding from existing lupus services and guidelines from across the world, to offer consensus on global standards of lupus care and drive timely, evidence-based treatment to maintain health status, minimize symptoms, and prevent disease flares and resulting organ damage. The purpose of this Charter is to mobilize governments, healthcare providers, policymakers, health industry partners and patients/caregivers to address the unmet need and burden of lupus, ultimately working together to deliver meaningful improvements in care, both now and in the future. This Charter focuses on SLE (Systemic Lupus Erythematosus) as the most common form of lupus from across the world. This Charter presents recommendations for improving care, based on four key principles which are listed below.
Healthcare practice reforms can improve health outcomes for patients with lupus; unfortunately, there are no global guidelines for care and therefore differences in regional guidelines can contribute to affecting a patient’s quality of life. The persistent challenges facing lupus patients worldwide has garnered attention from patient groups and international clinical experts who are driving robust consensus work on the unmet need facing patients, such as:
- Living with systemic lupus erythematosus in 2020: a European patient survey
- European Reference Network – Systemic Lupus Erythamatosus
- The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research
Lupus can significantly impact the lives of people with the condition, both physically and emotionally. It can often prevent people from working, attending school, or taking part in social activities. Earlier diagnosis, access to accurate information about the condition, access to specialist care teams working collaboratively, and access to appropriate treatment are critical to ensuring that the impact of lupus on patients’ lives is minimized as much as possible, and in a manner which patients can play an active role in their own care. Understandably, many healthcare professionals lack knowledge and experience of treating lupus, and the lack of an aligned global approach for lupus management can have a large impact on patients and the care they receive. Here are the Charter’s recommendations for improving care, based on four key principles:
Four Principles of Quality Care for People Living with Lupus
Principle 1: Lupus patients deserve recognition and understanding of their early symptoms of lupus to drive timely, accurate diagnosis and assessment so that they can receive the best care available as soon as possible
What lupus patients might be experiencing:
- People living with lupus may find that not all doctors are able to recognize lupus symptoms which can mean their diagnosis might be slower than it should be – it can take between 3-7 years
- Family, friends or employers of people living with lupus may not understand or be aware of the impacts of the condition. This might mean employers don’t realise that lupus can cause fatigue and that people living with lupus need more time to rest than others
- Doctors may view the impact of lupus on their life differently, which could mean that people living with lupus don’t get support for things that matter to them most
There is an opportunity to ensure:
- Ensure people living with lupus feel able to have a conversation with a healthcare professional about how lupus impacts their life and decide together solutions that may help
- Ensure information about lupus is made available to family, friends and employers of people living with lupus to raise general awareness and understanding of lupus symptoms and the impact that it can have on that person’s life
- Ensure that doctors, nurses and other healthcare professionals are able to recognise lupus symptoms and diagnose it in the same way that is appropriate to their role.
Principle 2: Lupus patients deserve access to information about their lupus, so they can play an active role in the management of their condition, minimize flares and reduce the impact of lupus on their life
What lupus patients might be experiencing:
- People living with lupus may not have the right information or be given it at the right time to help them take care of themselves and manage their lupus. This means that they may not be able to know when their condition gets worse or when they are experiencing a flare and therefore when to tell their doctor
- People living with lupus may feel sad or depressed due to their condition and the impact of Lupus on their life
There is an opportunity to ensure:
- Ensure people living with lupus have easy-to-understand information that can help them understand their disease. This should support with asking the right questions when speaking with their doctor
- Ensure information is provided no matter where people live, their culture, or their background
- Digital health and self-management tools should be provided, for use to assess day-to-day symptoms and to provide consistent patient information
Principle 3: Lupus patients deserve access to a coordinated multi-disciplinary care team who fully understand their condition and their experience, regardless of who they are or where they live
What lupus patients might be experiencing:
- People living with lupus might see many different doctors to diagnose and treat their lupus throughout their life. This means they could experience more tests or appointments than usual
- People living with lupus may not have timely access to other healthcare professionals that care for all of their physical and mental health needs, such as psychologists, physiotherapists and occupational therapists
- People living with lupus may not live near a hospital that provides care for their lupus or be able to afford to travel to hospital for their appointments every week or month
There is an opportunity to ensure:
- Ensure people living with lupus have access to a coordinated team of doctors, nurses and other health care professionals (a multidisciplinary care team) who can discuss and understand all of their physical and mental health needs
- Ensure people living with lupus are provided with a dedicated and personalised care plan, developed with the multidisciplinary care team, with care available as virtual or telehealth appointments
Principle 4: Lupus patients deserve access to appropriate and comprehensive pharmacological and non-pharmacological care, which reduces the burden of their lupus and allows them to have a high quality of life for as long as possible
What lupus patients might be experiencing:
- People living with lupus might not be informed of or offered treatment(s) or holistic support that could help their physical and mental health needs and improve their quality of life
- The majority of lupus patients (up to 80%) are currently treated with oral steroids (glucocorticosteroids), which can have a number of negative side effects, including organ damage.
- People living with lupus might not always be offered to take part in a clinical trial or they may not know what a clinical trial is. This means they might not be able to try new types of treatment
There is an opportunity to ensure:
- Ensure care teams are properly communicating treatment options with people living with lupus, so they are well informed and can be an active participant in treatment decisions
- Ensure people living with lupus are offered not only medicines to treat and control their Lupus, but also treatments that do not involve medicines, such as exercise
- Ensure treatment(s) help people live a better life with lupus, and minimise the use of glucocorticosteroids where possible
- Ensure doctors share information about clinical trials and talk to people living with lupus about if they can take part, and any advantages or disadvantages
Click here to view the SLE Patient Charter infographic.