ERN ReCONNET questionnaire

LUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]

ERN survey on awareness and knowledge of clinical practice guidelines

An ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018. These surveys provide vital information to the doctors and researchers setting guidelines for our care. This survey can be filled in by patients or their families […]

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1 week ago
LUPUS EUROPE

During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients.

Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study.

Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients' experience & state of mind as well as to objectify emerging signals of new shortages in Poland.

This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern.

How did hydroxychloroquine affect you?
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?

lupus.bmj.com/content/10/1/e000895
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During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients. 

Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study. 

Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients experience & state of mind as well as to objectify emerging signals of new shortages in Poland. 

This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern. 

How did hydroxychloroquine affect you? 
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?

https://lupus.bmj.com/content/10/1/e000895Image attachmentImage attachment+3Image attachment
1 week ago
LUPUS EUROPE

Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!

The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

Learn more about this competition:

www.eular.org/pare-stene-prize📣 Meet the 2023 #EULAR Edgar Stene Prize Jury!

🏆 The call for essay submissions have now closed and winners will be announced on 15 March!

Learn more about the #EULARStenePrize here 👉 pulse.ly/wforpnid8f

Register to #EULAR2023 👉 pulse.ly/r1xt9zca9p
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Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!  

The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

Learn more about this competition:

https://www.eular.org/pare-stene-prize
1 week ago
LUPUS EUROPE

Sara, our Patient Advisory Network (PAN) coordinator, invites you to take part in our #kicklupus competition.

Remember that you can participate by sending your testimonial in your own language to zoe@lupus-europe.org.

Let's tell the world how volunteering for a #lupus organisation has helped change our life!

This competition is open only to people living in Europe with a diagnosis of lupus who are volunteers in a European Lupus organisation.
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1 week ago
LUPUS EUROPE

Oh wow 🤩!

Due to unforeseen circumstances, we have 2 spots left for our Senior Panel!

If you live in Europe and have been diagnosed with #lupus before 2000, don't think twice and come to Barcelona with us!

The deadline for applications is this Friday!

Watch the video to make sure you fulfil the requirements and get to know more about this exciting opportunity!
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