INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus”

You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous achievement so a huge thank you to those who were able to contribute; it makes a significant difference to this or any other research. 20 members were selected to participate in a face to face focus group weekend in Pisa during the weekend of 1-3 March 2019. Participants were selected based on their clinical history and combination of symptoms so as to portray a wide experience of living with Lupus.

The INTEGRATE project, coordinated by Prof. Marta Mosca from the Rheumatology Unit, Department of Clinical and Experimental Medicine of the University of Pisa (Italy), started on 1st of September 2017 and will last two years. Consortium is composed by three partners from Italy and Germany and involves players from university hospitals and academia.

The main aim of INTEGRATE is the development of a strategy for the monitoring and treatment of chronic diseases relying on the integration of Quality of Life data, Patient Reported Outcomes, and other patient driven data to the traditional evaluation. The INTEGRATE Project was co-funded by the European Union’s Health Programme (2014-2020) (*)

The first evening was an opportunity to relax from the travelling and meet altogether for the first time. There certainly was variety in the group; patients/people with Lupus and professionals new and old (time not age!) Lupus Europe members, warriors starting their journey and those who’ve been around the block more times than they care to remember, tales of experiences both positive and  challenging, tips, tricks and so much more. In essence and already with only light conversation to witness, the crucial sharing – and exchange – had truly begun….

The itinerary had been sent in advance but we can presume that a huge A2 copy in the hotel foyer was worth it’s weight in gold! The weekend would be a combination of focus groups, physiotherapy, discussion and importantly, time for us to rest and recharge. Even so, the details and arrangements were all taken care of by a team of dedicated staff. Everybody was escorted to the St. Anna School for the first day. En route, another chance to meet other participants and hear experiences.

Scuola Superiore Sant’Anna (St. Anna school of Advanced Studies) is stunning. They say never judge a book by it’s cover but with one look at the surroundings on approach, already a sense of excellence could be felt. Absolutely, it is never about the exterior but certain that  as keen as participants were to get inside, the hosts were equally excited to welcome everybody in to begin the work. This stunning learning environment was waiting for us to take our seats. Everybody walking in awe to the lecture room. Lecture room? Try fresco painted walls, traditional patio doors, carvings, views to ancients artefacts, sculptures, banana trees. Banana trees!

For the duration, people were split between focus group and physiotherapy sessions. The aim of the Focus Group was to take the on-line survey responses and delve further for a deeper understanding. Clinicians and researchers were not allowed to be present. Any researches that did enter the space, were there to ensure transparency, did not comment and therefor could not influence responses.   It’s always fascinating how even in small groups, opinions can differ yet all so valid. The facilitator was able to hold fairly all perspectives and will amalgamate these for the final summary, hopefully published May 2019.

During the physio activity, exercises demonstrated were simple, gentle and a proven method to improve muscle strength and joint mobility. Many people shared their exercise solutions and hurdles but we will ignore the participants who thought the water bottles were for alternative weights not drinking! This was a privilege to be shown and advised by a Lupus-aware expert and received comments such as, ‘this is like a private class!’. The insertion and scheduling within the programme to ‘move’ was a perfect balance.

Beautiful Pisa. The town has blended the traditional with the new but as the project is located within the Old Town, one couldn’t help but consider and be immersed in the rich history all around. Wikipedia  says,

Pisa (/ˈpiːzə/; Italian: [ˈpiːza], locally also [ˈpiːsa]) is a city and comune in Tuscany, central Italy, straddling the Arno just before it empties into the Ligurian Sea. It is the capital city of the Province of Pisa. Although Pisa is known worldwide for its leaning tower (the bell tower of the city’s cathedral), the city of over 91,104 residents (around 200,000 with the metropolitan area) contains more than 20 other historic churches, several medieval palaces, and various bridges across the Arno. Much of the city’s architecture was financed from its history as one of the Italian maritime republics.

The city is also home of the University of Pisa, which has a history going back to the 12th century and also has the Scuola Normale Superiore di Pisa, founded by Napoleon in 1810, and its offshoot, the Sant’Anna School of Advanced Studies, as the best-sanctioned Superior Graduate Schools in Italy. Students are admitted after passing public national and international competitions. Sant’Anna School of Advanced Studies offers to those who decide to take excellence, a multi-disciplinary approach to learning, research, and internationalization.

But what is a place without it’s people? The steering force and passion of the Integrate Team is highly motivational, their enthusiasm infectious. The combination of these qualities aligned with the commitment and desire from participants, resulted in a much-needed way of working. No hierarchy, no preconceived ideas, no judgements simply a willingness to pioneer and prove a new way to partner for successful Lupus healthcare. Knowing these people are dedicating their work for the benefit of the hundreds and thousands of people living with Lupus is humbling. And for that, an acknowledgement of thanks to all, notably, Prof. Dr. Marta Mosca (University of Pisa, Department of Clinical and Experimental Medicine), Prof. Giuseppe Turchetti (Sant’Anna School of Advanced Studies, Institute of Management), Prof. Dr. Matthias Schneider (Heinrich-Heine-University Düsseldorf, Policlinic of Rheumatology & Hiller Research Unit) and all project associated staff.  Last but not least, Lupus Europe and member organisations for actively making a difference for people now and in the future.  Thank you – your commitment truly matters.

 

(*)  project website at https://www.integrate-sle.eu

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2 hours ago

😨 Did you miss our #EULAR2025 debrief webinar?

😮‍💨 Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

www.facebook.com/LupusEurope/videos/1257813502412444
... See MoreSee Less

😨 Did you miss our #EULAR2025 debrief webinar?

😮‍💨 Dont worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

https://www.facebook.com/LupusEurope/videos/1257813502412444
3 days ago

‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.

😊 Share your experiences and how you #KickLupus & UV light in your daily life
... See MoreSee Less

‼️ According to our Living with Lupus in 2020 survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus. 

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms. 

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus. 

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection. 

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment. 

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities. 

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun. 

😊 Share your experiences and how you #KickLupus & UV light in your daily lifeImage attachment
6 days ago

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!
... See MoreSee Less

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!
1 week ago

🌟Thank you to all who attended our #EULAR2025 debrief webinar!

🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.

Stay tuned for more news and updates & don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
... See MoreSee Less

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