Lupus Europe at the Lupus Academy’s 12th Annual Meeting: Highlighting Patient Perspectives

 

The Lupus Academy is a long-term initiative committed to improving patient outcomes in systemic lupus erythematosus (SLE). The Lupus Academy provides a highly interactive educational forum and brings together experts from around the world to discuss the latest advances in SLE.

 

Each year, the Lupus Academy’s annual meeting plays an important role in disseminating and discussing cutting edge scientific and clinical research on SLE. This year, the 12th Annual Meeting of the Lupus Academy, held as a hybrid event with an in-person gathering in Barcelona, Spain, from 8th to 10th September 2023, continued its tradition of fostering collaboration and innovation in the fight against lupus.

 

Subjects Explored:

 

At this year’s meeting, attendees delved into key subjects that impact the lives of people with lupus. Discussions ranged from paediatric lupus to the ever-relevant topic of vaccination. The management of lupus nephritis, a challenging aspect of SLE care, was also a focal point. Furthermore, the meeting featured an exploration of the new 2023 ACR/EULAR recommendations for the management of SLE, shedding light on evolving standards of care.

 

The Patient Perspective:

 

Jeanette Andersen, Lupus Europe Chair, presented at the Lupus Academy Meeting. Her presentation brought into sharp focus the vital, but sometimes overlooked, patient perspective in the management of lupus.

 

Lupus can place a significant burden on the lives of people it affects. However, patients and physicians often have differing priorities when it comes to this complex disease. Physicians may primarily focus on controlling disease activity to prevent damage accrual, while patients grapple with symptoms that may profoundly affect their health-related quality of life (HRQoL).

 

 

 

 

 

Despite patient and physician efforts, there can be a substantial discordance between how physicians might assess the disease and how patients might experience it:

 

  1. Patients often report relevant clinical symptoms even when physicians consider them to be in remission.
  2. Patients tend to rate disease activity higher than physicians.
  3. Patients emphasise the importance of subjective manifestations, while physicians often prioritise laboratory abnormalities.

 

This discordance reveals a gap in understanding and prioritising outcomes between patients and physicians. A way to bridge this gap is through Patient Reported Outcomes (PROs). PROs allow us to capture the aspects of the disease that have a direct impact on patients, constituting their unique burden.

 

In her presentation, Jeanette Andersen emphasised that the dialogue between doctors and patients should address the symptoms that are most bothersome for the individual patient. What is most burdensome for one person may not hold the same significance for another, and this disconnect can be particularly detrimental to HRQoL and overall care, especially when dealing with symptoms that are challenging to manage with traditional SLE treatments.

A picture of Jeanette Andersen's presentation to the Lupus Academy.

Conclusion:

 

The Lupus Academy’s 12th Annual Meeting reaffirmed the significance of collaboration and the integration of the patient perspective in the fight against lupus. In the quest for better lupus management, it is crucial to have a view that encompasses both medical expertise and the lived experiences of those with lupus. Together, we can continue to make strides in improving the quality of life for people living with SLE.

 

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2 weeks ago
LUPUS EUROPE

๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ.

๐Ÿ” Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

๐Ÿค” So, how can we #kicklupus with prevention?
... See MoreSee Less

๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ. 

๐Ÿ” Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

๐Ÿค” So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

๐ŸŒŸ Calling all Lupus Patient Organisation Volunteers! ๐ŸŒŸ

๐Ÿ—ฃ๏ธ Your Voice Matters!

We want to hear from YOU!

โ“ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! ๐Ÿ’Ž

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

โœ๏ธ You can answer in English or in your own language.

Ready to share your thoughts?

๐Ÿ”— Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

๐Ÿค— Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! ๐Ÿ’ช
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1 CommentComment on Facebook

๐Ÿคท‍โ™‚๏ธ

4 weeks ago
LUPUS EUROPE

๐Ÿ“† New month, new challenge!

๐Ÿ As the calendar flips to November, our #kicklupus campaign has a new theme!

๐Ÿค” Can you guess what this month's theme is all about?

๐Ÿ’ก Hint: It's all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

Ready to embark on this journey with us? ๐Ÿ’ช
... See MoreSee Less

๐Ÿ“†  New month, new challenge!

๐Ÿ As the calendar flips to November, our #KickLupus campaign has a new theme! 

๐Ÿค” Can you guess what this months theme is all about?

๐Ÿ’ก Hint: Its all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. 

Ready to embark on this journey with us? ๐Ÿ’ช

1 CommentComment on Facebook

๐Ÿ’ช๐Ÿป๐Ÿ€

1 month ago
LUPUS EUROPE

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLet's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

โœ… Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients can't receive live vaccines

โœ… Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

โœ… Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

๐ŸŒ Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

โœ… Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients cant receive live vaccines

โœ… Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

โœ… Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 

๐ŸŒ Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment
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