In rare and complex connective tissue diseases, patient partnership is essential to address diagnostic delays, fragmented care, unmet needs, and the research agenda. European Reference Network (ERN) ReCONNET, the network dedicated to rare and complex connective tissue diseases, has implemented a structured and transferable model of patient partnership. Patients contribute to every phase of research and care development: from identifying unmet needs to co-authoring scientific publications. Patient input also shapes educational initiatives and strategic planning. By institutionalising partnership through governance structures and shared decision-making processes, ERN ReCONNET shows that involving patients as equal stakeholders enhances the relevance, quality, and effect of activities. This Personal View was co-written with the direct partnership of authors with lived experience of rare and complex connective tissue diseases and reports a model that can be adapted to other rare diseases and rheumatological settings, promoting a culture of patient-centred innovation in health-care systems.

Abstract Background Rare and complex connective tissue diseases (rCTDs) pose significant challenges for healthcare systems due to the lack of standardized approaches for recording and monitoring patient data. The European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) aims to harmonize patient data recording practices across member centres. This study evaluates current practices and unmet needs related to coding systems and monitoring. Methods A cross-sectional study design was employed, involving three phases. The first phase, mapped the unmet needs for coding systems and monitoring practices across ERN ReCONNET centres. The second phaseprioritized these unmet needs, and the third phase aimed at defining action points to address those unmet needs by means of a Level of Agreement. We conducted a web‑based survey among ERN ReCONNET centres to evaluate current practices(response rate 75.0% [48/64] in Phase 1); and an additional inquiry in Phase 2 (58 responders) to identify the unmet needs of the Network. Data were analysed using descriptive statistics. Results The initial survey included responses from 48 centres. About 42% of the centres used some form of paper-based records, and only 25% used dedicated biobank software. ICD-10 was predominantly applied for coding diagnoses, sub-diagnoses, and comorbidities, while ORPHAcodes were also employed, though less frequently. Clinicians were primarily responsible for data collection and submission, leading to significant administrative burden. The second survey, with 58 respondents, identified the lack of adoption of ORPHAcodesand the heterogeneity in coding systems as top unmet needs. Additionally, the survey highlighted the significant burden on clinicians and the need for improved information technology(IT) infrastructure to facilitate data extraction for ERN yearly monitoring. Lastly, 7 action points were identified in order to plan tangible actions to address the unmet needs of the rCTDs community. Conclusion This study highlights the heterogeneity in data documentation practices, coding system usage, and monitoring activities across ERN ReCONNET centres. The findings underscore the need for standardization and optimization of data management processes. Addressing these challenges through digitalization and standardized coding practices is essential for realizing a truly integrated and collaborative network for rare connective tissue diseases across Europe.

Background: While the overall burden of living with lupus is well-documented, there has been limited focus on identifying life impact differences in SLE patients living with and without lupus nephritis. Understanding if such differences exist would enable the potential design of specific lupus nephritis education or management tools. Objectives: To identify the key differences in the lived experience of Lupus Nephritis patients compared to SLE patients not reporting nephritis based on the "Living with Lupus in 2020" survey database. Methods: The 4375 responses from the Living with Lupus database were categorized into two groups: LN (if the answers indicated both 'organ involved = Kidney' and 'symptom regularly experienced = Kidney problems'), and non-LN (not meeting the criteria above). Next, the data was compared to identify highly significant differences (at least p<.01) between the groups. Results: 782 participants were identified as LN (94.4% women, age 42.8 +/- 12.6) and 3593 non-LN (95.8% women, age 44.9 +/-12.6). In the LN group Child onset SLE was 9.1% compared to 4.8% in the non-LN. The following domains showed significant additional burden in LN patients: Family Planning: 41.0% of LN reported having no children vs. 31.0% for non-LN. In addition, 50.7% of LN said they would have liked to have more children compared to 34.7% only for non-LN. Professional life: 18.8% of LN reported their currents status as "stopped work for medical reason" vs. 13.8% in non-LN. 74.0% said their lupus had impacted their career compared to 66.1% for non-LN, with differences in having to stop work (+7.9%), missing promotion opportunities (+3.2%), moving to flexible hours (+2.5%). This translated in a deteriorated economic profile as 22.0% of LN reported having often or always difficulties paying all bills vs. 16.4% for non-LN. 15.3% of LN patients reported they could not do the studies they wanted compared to 10.2% for non-LN. Disease features and medication: LN patients average 10.2 (+/-3.6) symptoms or features compared to 8.4 (+: - 3.6) for non-LN. The additional 1.8 symptoms come mostly from kidney issues (0.98), high blood pressure (0.25), hematologic problems (0.13), shortness of breath (0.08), osteoporosis (0.07) and hair loss (0.07). Most bothersome symptoms of LN patients are fatigue (53%), kidney issues (51%) and pain/swelling joints (42%). On average, LN patients regularly take 6.0 medications (+- 2.4) for their lupus vs. 5.0 (+-2.4) for non-LN patients, mostly due to immunosuppressants (+0.25), blood circulation (+0.21), oral steroids (+0.17), stomach protection (+0.14), Calcium (+0.09) and Vitamin D (+0.08) Quality of life: Overall HRQoL using the EQ5D 5 dimensions shows a burden of 2.63 (+/- 0.74) (on a scale from 1 fully able to 5 fully unable) compared to 2.48 (+/- 0.74) for non-LN, with all domains increasing in similar proportion. 79.3% of LN patients (compared to 71.1%n of non-LN) perceive themselves as less active than others of the same age. 68.3% have high or very high worries about their lupus progressing (compared to 61.3% for non-LN). Conclusion: Several factors point to a higher burden on patients' life with lupus nephritis compared to SLE patients with no nephritis, mostly affecting the same domains such as family planning, professional life, disease features and medication and quality of life, but with higher burden. REFERENCES: [1] Cornet A, Andersen J, Myllys K, et al. Living with systemic lupus erythematosus in 2020: a European patient survey. Lupus Science & Medicine 2021;8:e000469. doi:10.1136/ lupus-2020-000469 Acknowledgements: of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies. Disclosure of Interests: None declared.

To assess the burden of systemic lupus erythematosus (SLE) from the perspective of patients in Latin America (LATAM) in 2024. During May 2024, as part of International SLE Awareness Day, the Grupo Latinoamericano de Estudio del Lupus (GLADEL) disseminated an anonymous, bilingual (Spanish/Portuguese) online survey to patients with SLE. The survey, developed by Lupus Europe, was distributed through physicians and patient associations across LATAM and explored sociodemographic characteristics, disease features, treatments, and the impact on daily life. A total of 1991 responses from 21 Latin American countries were analyzed (Argentina, Brazil, the Dominican Republic, Chile, and Peru contributing the highest numbers). Most respondents were women (95.2

Systemic lupus erythematosus (SLE) is a complex autoimmune disease with important variations in disease burden across patients and European countries. In response to previous surveys revealing the burden of SLE on patients, Lupus Europe conducted the 2024 'Swiss Knife' survey to further investigate disease burden, treatment goals, and patient-physician interactions in European patients living with lupus. Between April and May 2024, 4525 patients with self-reported physician-confirmed SLE across 36 European countries participated in an anonymous online study. Descriptive statistics were utilized to analyze responses related to SLE symptoms, treatment satisfaction, and unmet needs. Results indicated that fatigue (84.9 %), joint pain (72.8 %), and muscle pain (62.6 %) were the most prevalent symptoms, with fatigue notably under-addressed in treatment plans. The mean lupus burden score was high at 6.94 (SD: 1.95) on the 0-10 scale, highlighting a significant impact on quality of life, particularly in terms of fatigue and physical consequences. Notably, only 7.9 % of participants reported no disease flares in the past five years, contrasting with previous literature on remission rates. In terms of treatment goals, patients favored achieving low disease activity or remission without treatment, while satisfaction with current therapies was moderate, with 67.5 % expressing contentment but many indicating unmet needs, particularly regarding fatigue management and access to non-pharmacological therapies. The findings of Lupus Europe's 2024 Swiss Knife study underscore the necessity for improved communication between patients and healthcare professionals and the integration of patient-centered strategies to optimize SLE management and enhance quality of life across Europe.

Systemic Lupus Erythematosus (SLE) imposes a great burden on the lives of patients. Patients' and physicians' concerns about the disease diverge considerably. Physicians focus on controlling disease activity to prevent damage accrual, while patients focus on symptoms that impact on Health-Related Quality of Life (HRQoL). We explored the physicians' and patients' perspective and the potential role of Patient Reported Outcomes (PROs). Physicians are aware of the theoretical usefulness of PROs to collect information deriving from the patients' perspective. However, they often do not know how to interpret and use these questionnaires in a real shared therapeutic strategy. For the patients, it's important to be seen as a whole person with a true consideration of how they feel and function. Strategies to help bridge the communication gap could include: better use of time during visits, preparing for the consultation, a more understandable lay language used by the doctor, a dedicated nurse.

Background: Upon recognising the dearth of reliable information on lupus online, the Lupus100 project was conceived. The aim of Lupus100 is to provide access to quality information about lupus to 95% of European lupus patients in their own language, therefore eliminating a big barrier to quality information. The project was made possible thanks to the effective collaboration between patients and doctors who worked together to create the English version and to translate the text in multiple European languages. After 12 months of the Lupus100 website being live, there are multiple learnings from this project. Objectives: Understand which questions are most consulted on the Lupus100 website over a 13-month period, with a goal to discerning the most important information and identifying possible misconceptions. Methods: Google Analytics, user metrics such as page views, unique user counts, and content specifics were tracked from October 2022 to December 2023. Subsequently, the resulting top questions were identified. Results: Since ist launch in October 2022, the English version oft he website, has seen consistent user and site traffic having recorded 146,373 views from 53,571 distinct users. The multilingual sites have showed very high engagement as well. The top 10 questions looked at in detail: 1.What is lupus? 2.Is lupus contagious? 3.What are the different forms of lupus? What is drug induced lupus? 4.Can I have a normal sex life? 5.Is there a relationship between lupus and stress? 6.Why does lupus mainly affect women? Does male lupus exist? 7.What is neonatal lupus? 8.Can lupus be associated with other autoimmune diseases? 9.Should we follow a special diet in lupus? 10.I have lupus. I also have symptoms of Sjogren's syndrome or antiphospholipid syndrome. Do I really have several diseases? Persistent traffic to questions such as "is lupus contagious?" hints at potential knowledge gaps and underscores the urgency for valid and factual content on lupus reaching patients. The analysis also revealed that a high number of views could not be linked to specific questions as users focused on the short answers available rather than consulting the full answers on its specific page. New tools have been implemented to capture such data onwards. Conclusion: The analysis of lupus100.org most frequently asked questions provides important feedback on areas where additional information is necessary. These learnings have potential relevance for the content of therapeutic patient education programmes, emphasising the importance of accurate and targeted information for patients in line with knowledge gaps. Patient organisations should also calibrate information produced, striking a balance between addressing basic misconceptions and providing advanced information, in order to optimise patient education. An ongoing monitoring of lupus100.org can provide guidance to gear communication programs to most pressing needs. REFERENCES: NIL. Disclosure of interest: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies. Acknowledgements: NIL. Disclosure of Interests: None declared.

Objectives To achieve consensus on domains of active disease for inclusion in a novel outcome measure for SLE randomised controlled trials (RCTs), the Treatment Response Measure for SLE (TRM-SLE).Methods Domains nominated by TRM-SLE Taskforce members were rated in a two-stage modified Delphi study. Each stage comprised two online survey rounds separated by a structured discussion meeting. In Stage 1, expert lupus clinicians and patient representatives rated domain 'importance' (impact on symptoms, function or survival). In Stage 2, clinicians rated 'important' domains on three characteristics relevant to RCT utility: 'appropriateness' for evaluating change in disease activity, 'representation' in patients with active SLE and 'measurability' in an RCT context. Consensus for domain inclusion was prespecified as all four characteristics achieving a rating >= 7 on a 1-9 scale by >= 70% of participants.Results Domain nominations from 36/59 (61%) TRM-SLE Taskforce members yielded 34 potential domains which were rated in the modified Delphi study. At least one Delphi round was completed by 87 clinicians and 13 patient representatives. In Stage 1, 14 domains met consensus on 'importance' in both clinician and patient groups, and 11 domains met consensus among patients only. After Stage 2, eight of these domains also reached consensus on 'appropriateness', 'representation' and 'measurability': alopecia, arthritis, haemolytic anaemia, nephritis, mucosal ulcers, rash, serositis and thrombocytopenia.Conclusions Considering patient and clinician perspectives, we reached consensus to include eight disease activity domains for future development into the novel TRM-SLE clinical trial outcome measure, aiming to improve trial interpretability and success.

Background: In the absence of strategic direction, patient groups struggle to deliver results that meet their ambitions. Projects selection based on short term considerations or association to funding combined with changing priorities prevent more significant projects implementation. Objectives: To share Lupus Europe experience on how a simple strategic plan helped achieve long term goals and mobilise resources. Methods: Back in 2011, Lupus Europe was a small organisation, with less than 30k€ annual budget, and one key event per year. The Board then decided to take a more strategic approach. Starting from defining a simple and clear vision ("A fulfilling life for all people living with lupus in Europe, until we reach a world without lupus"), the organisation defined the biggest contributions it could make to reach it, which became 4 Strategic objectives (Research is supported, Members are Empowered and energized, Selected partners and media make lupus voice heard and the community is sustainable). From these cascaded a choice of ways to achieve them (our strategic pillars) for each of which we defined a number of 5 years measurable deliverables to pursue. These were cut in intermediate steps, leading to a 5 years plan, aligned with clinicians and academics. The plan was then voted by our members and presented to our partners, organised in visual ways that help memorise it and structure our presentations. It became the backbone of our communication, decision making, actions and reporting: At each Board meeting, we review progress on our annual steps, adjusting agendas and activities to meet the goals and assigning leadership where needed. Around September, we look at the next years' steps and amend them if needed to better reach our 5-years's goals and prepare our funding requests to industry, based on OUR projects and plans, not theirs. Results: In 2023, Lupus Europe is in its 3rd "5-years plan". The number of industry sponsors grew from 2 to 14. We are recognised as an EMA partner. Our volunteers network delivered more than 3,000 hours of support from more than 50 motivated volunteers. We run patient panels, surveys, a Patient advisory network, consistent social media and a website translated in 15 languages. We can approach partners with clear asks and select the projects we think add real value, and these projects are incredibly bigger than what we imagined ever reaching 12 years ago. Our total budget now reaches 400k€, more than we need for all our planned activities, allowing us to reject any sponsor not meeting our requirements. We measure our progress 3 times a year, allowing corrective action where needed. Our plan allows us to focus on priority and reject distractions. Virtually all our members and industry partners know our strategies, repeated year after year as the anchor of all we do, and can explain how they fit together. We were rated "best in class" by many industry partners on our "professional strategic focus" and the quality and quantity we deliver as a volunteer based organisation. We know where we go, and this reinforces our sense of purpose, our energy to deliver, our confidence and our feeling great as a team. Conclusion: Designing a Strategic plan is a key enabler that all patient organisations, regardless how small they are, can implement. It guides actions and helps achieve objectives. It is substantially easier to do than many think, but requires patience to install. REFERENCES: NIL. Acknowledgements: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies. Disclosure of Interests: None declared.

Objective:To optimise the organisation of care and encourage the adoption of good clinical practices, the RarERN Path© methodology was designed within ERN ReCONNET. The aim of our work was to report the application of RarERN Path© on systemic sclerosis within the ERN ReCONNET centres, providing a feasible and flexible organisational reference model for optimising the systemic sclerosis care pathway in different countries. Methods:RarERN Path© is a six-phase methodology which enables the creation of a reference organisational model co-designed on the basis of the expertise of different stakeholders. It foresees six phases, ranging from the map of existing patients' care pathways and patients' stories, to the consensus on a common organisational patient care pathways, and its key performance indicators definition. Results:The agreed reference model highlights the importance of having an organisational flow for referrals that foresees how patients may access directly the specialised unit from the different referrals. Specific specialised visits were considered as mandatory to be organised and they included cardiologist, pneumologist, gastroenterologist, psychologist, nephrologist, dermatologist, wound care specialist/nurses and other healthcare professionals (such as nurses, social workers and nutritional counselling). Moreover, specific services related to therapy were highlighted as strongly recommended to be organised, mainly represented by infusion therapy and wound care, as well as occupation therapy and physiotherapy. Conclusion:The organisational model emerged from our investigation emphasises that the organisation of specific services for systemic sclerosis treatment should be organised as a solid support for implementing the existing recommendations on systemic sclerosis management in real life.

Objective Provide lupus doctors with concrete insights from patient's experiences that can feed their day to day practices and improve outcomes. Methods Lupus Europe's Patient Advisory Network, Youth group and Board provided qualitative input on patient experiences on a range of topics. Their input was thematically analysed and conclusions drawn. Results Diagnosis - A lupus diagnosis for many patients provided answers and an initial sense of relief. However, for a significant number it triggered fear and anxiety. Signposting at diagnosis to support groups would be welcomed and may allay some fears. Doctors sometimes tell patients that their lupus is 'mini' or small when the lupus is 'low severity' medically, perhaps trying to reassure. However, feedback is that this is patronising and minimises the effect lupus has. Only a handful of people felt it would make them feel better. For many, the unpredictable aspect of lupus made such a statement "irrelevant". Information – Patients would like substantially more information from their doctor, at diagnosis. Some found initial information in support groups or patient organisations, others used books or the internet, which sometimes flagged outdated and worrying information. The use of the internet is a large part of many lupus patients journey, at diagnosis to learn about Lupus, find support groups or seek research and journals, but also when they identify new symptoms or get new medication. Using google for lupus is rarely a good idea! What would be most helpful is that the doctor directs them to reliable sources of information online and in print, if required (like the lupus100.org site). To note, Chat GPT is not (yet?) a resource that is used by patients for Lupus information. Adherence - On adherence, patients said side effects were the biggest issue, followed by mechanical issues, such as size and taste. A pill box was seen as helpful to improve adherence to pharmacological treatments (also to check if you have already taken your medication, a common issue with lupus fog). When asked how doctors could improve adherence, the overwhelming consensus was explaining exactly why each treatment is needed and the risks of not adhering. Hot topics - Pregnancy can be challenging with lupus but often possible. Patients want doctors to tell young women and men that it is possible with proper care. The need to discuss pregnancy with males came up repeatedly. On the topic of sex the results were more mixed with 50/50 on wanting, or not, doctors to proactively raise the subject. Also of interest, alcohol, smoking and drug use are topics that patients will not spontaneously raise, but would like to discuss with their doctor. Communication - Around half of respondents have a lupus doctor who operates in a multi-disciplinary team but a common theme was poor communication between different specialists. A theme that came out very strongly was that patients want to feel listened to and that lab results are only part of the picture. They want doctors to consider how Lupus is affecting their function, quality of life and their mental health. Which specific elements doctors extract from this is up to them, but ensuring the patient feels heard brings positive impacts and credibility. Holistic approach - Diagnosis can be a relief but can also cause anxiety, as can a life with Lupus, so a discussion around mental health would be welcomed by many. Patients feel that doctors tend to place emphasis on clinical and lab findings when these are not always the most important things to patients. They seek a holistic approach where quality of life and function are considered and want doctors to listen to what matters most to them. Empathy and a non-judgemental approach are highly valued. Conclusion In day to day practice, small things can make a big difference. Signposting patients to support groups or proper information; Expressing that you have heard them; Bringing up for possible discussion the hot topics of Pregnancy (also with men), alcohol, smoking and drugs; and Addressing the issue of mental health in a more holistic approach are proposed insights for improved Patient-Doctor collaboration. Acknowledgements This work was supported by Lupus EUROPE's Patient Advisory Network, Youth group and Board members. While this work was not funded specifically by any sponsor, Lupus Europe benefits from grants from 14 different Pharmaceutical sector companies.

Background: Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease that can sometimes be accompanied by a significant psychological burden, particularly anxiety and depression, which can be detrimental to patients’ quality of life and can complicate disease management [1]. Prior research has indicated a bidirectional relationship between SLE pathophysiology and psychological comorbidities, advocating for comprehensive care [2]. Objectives: To quantify the influence of multidisciplinary care access, including access to lupus nurses, on the mental wellbeing and prevalence of self-reported anxiety and depression symptoms of SLE patients within Europe across diverse healthcare systems. Methods: Results from Lupus Europe’s “Living With Lupus in 2020” survey [3] were analysed to assess the existence of any correlation between the degree to which the patients felt they had appropriate access to multidisciplinary care and/or to specialised lupus nurses, and the prevalence of self-reported anxiety and depression symptoms as features of their lupus. Comparative analysis was employed to evaluate the relationship between healthcare access and the incidence of anxiety and depression, using logistic regression models to control for potential confounders, such as demographics and disease severity. Results: Data from 3,586 respondents revealed that patients that ‘Agree’ or ‘Strongly agree’ that they have access to multidisciplinary teams reported anxiety and depression symptoms 9.7% less frequently than those disagreeing or strongly disagreeing with the statement (40.1% vs. 49.8%; p= <.001). Access to specialised lupus nurses showed a similar trend, with a lower frequency of reported anxious and depressive symptomatology (41.0% vs. 48.0%; p= <.001). The results were statistically significant even after adjusting for confounders. Conclusion: The findings suggest that access to a multidisciplinary healthcare team and specialised lupus nurses is associated with a lower reported incidence of anxiety and depression among people with SLE. These results indicate that an integrated approach to lupus management, may be beneficial and should be used as one of the ways aimed at reducing the psychological burden of the disease. REFERENCES: [1] Ungprasert P, Sanguankeo A, Upala S, Suksaranjit P. Prevalence of depression and anxiety in systemic lupus erythematosus: a systematic review and meta-analysis. BMC Psychiatry. 2017;17(1):70. Published 2017 Mar 21. doi:10.1186/s12888-017-1252-1.[2] Moustafa, A. T., Moazzami, M., Engel, L., Bangert, E., Hassanein, M., Marzouk, S.,... & Touma, Z. (2019). Prevalence and metric of depression and anxiety in systemic lupus erythematosus: A systematic review and meta-analysis. Seminars in Arthritis and Rheumatism, 10.1016/j.semarthrit.2019.06.017.[3] Cornet A, Andersen J, Myllys K, et al. Living with systemic lupus erythematosus in 2020: a European patient survey. Lupus Science & Medicine 2021;8:e000469. doi:10.1136/ lupus-2020-000469. Acknowledgements: NIL. Disclosure of Interests: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies.Figure 1Frequency of reported anxiety and depression symptoms according to Access to Multidisciplinary teams Figure 2Frequency of reported anxiety and depression symptoms according to Access to Specialised Lupus Nurses

Background: Many patient organisations are increasingly struggling to attract and retain volunteers to work on the organisation's key missions. Understanding what motivates them is a first step to better meet their aspirations and retain them to support our important roles. Objectives: To identify relevant drivers of volunteers' motivations across Lupus Europe's member organisations. Methods: A short survey has been distributed through Lupus Europe's volunteers and members networks asking for a short free-text description of what motivate(d) them to volunteer for a lupus patient organisation, as well as their role and level of volunteering work. Answers were manually categorised to the different Clary et al. (1998) functional motivators of engagement and frequency was analysed. Results: 111 individual statements were obtained allowing the identification of 214 underlying individual motivation drivers. -The "Values" dimension unsurprisingly topped the list with 56.8% of participants highlighting it, most often in the generic form of "a desire to help others". While it is the top driver of all roles (except Patient Advisory Network (PAN), it has a higher impact on Advocacy roles (88.9%), Peer-to-peer (P2P) (65%) and leadership roles (62.1%). -The "Social" dimension (being part of a group, connecting with people) comes second with 32.4%, mostly due to the PAN where it reaches 55.6%, compared to 21.6% in other roles. -A similar pattern is observed for "Understanding" (having opportunities to grow knowledge) averaging 31.5% across all participants, reaching 50% in the PAN group and 45% for Peer-to-Peer roles, but only averaging 14.8% in other roles. -The overall "Protective dimension" was mentioned by 20.7% of participants, with limited fluctuations by roles. The type of "Protection" considered is however very different between PAN roles where it takes a more physical dimension (growing knowledge to better fight my lupus, 25%) compared, at the other end of the spectrum to advocates that view it under a more psychological dimension (turning my disease's negative into positive, 22.2%). The other roles have a close to 50/50 split between these 2 extremes. -Enhancement (feeling better about myself, self-esteem) is only mentioned by 12.6% of participants. It has low appeal to most roles, but is present in 33.3% of Advocates, and 16.7% of PAN members. -Finally, the Career dimension (acquiring new skills that I can possibly use elsewhere) were also mentioned by 12.6% of participants, but this was more in Board and organisation support (Administrative, organising events, …) roles. The volunteers' motivation types also impact their level of engagement, measured in reported estimated hours of volunteering per month (averaging 25.4hrs amongst participants): People motivated by "values" volunteer 32hrs/month vs. 14 for those that aren't; Volunteers with "physical protective" motivation volunteer 31hrs vs. an average 15 for those with "Psychological protective" function". Volunteers displaying "Social, Career or Enhancement" motivations perform 15-17hrs/month on average vs. 27 for those less affected by such motivators. From those volunteers that deliver most hours, all are motivated by values, and none mentioned career or enhancement. Conclusion: This analysis of (lupus) volunteers motivation highlights opportunities to tailor Motivation talks to volunteering types to maximise their engagement. The findings also support the development of targeted motivational support structures, potentially augmenting volunteer satisfaction and commitment. REFERENCES: [1] Clary et al. (1998). Understanding and assessing the motivations of volunteers: A functional approach. Journal of Personality and Social Psychology, 74(6), 1516-1530. https://doi.org/10.1037/0022-3514.74.6.1516. Acknowledgements: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies. Disclosure of Interests: None declared.

Background: At EULAR 2023, the Lupus100 initiative was launched to address the issue of unreliable online sources by ensuring 95% of European lupus patients can access high-quality information in their native languages. This was made possible thanks to the effective collaboration between patients and doctors who worked together to create already 13 different language versions, available online. Reflecting on the first year since Lupus100's launch can provide valuable insights into patient engagement and information dissemination. Objectives: To analyse the most frequently consulted questions on the Lupus100 website to gauge patient concerns, pinpoint significant information needs, and identify any prevalent misconceptions. Methods: Google Analytics, user metrics such as page views, unique user counts, and content specifics were tracked from October 2022 to January 2024 to identify the resulting most commonly viewed questions among users and identify any trends. Results: The English site has attracted 151,225 views by 54,959 unique users. The multilingual websites have been similarly impactful. The top 10 questions looked at in detail were as follows: 1.What is lupus? 2.Is lupus contagious? 3.What are the different forms of lupus? What is drug induced lupus? 4.Can I have a normal sex life? 5.Is there a relationship between lupus and stress? 6.Why does lupus mainly affect women? Does male lupus exist? 7.What is neonatal lupus? 8.Can lupus be associated with other autoimmune diseases? 9.Should we follow a special diet in lupus? 10.I have lupus. I also have symptoms of Sjogren's syndrome or antiphospholipid syndrome. Do I really have several diseases? The navigation analysis, using "heat maps" and mouse movements also revealed that a significant proportion of users focused on the short answers provided under each question rather than the longer explanatory texts giving additional background and deeper explanation. This data highlights the necessity for patient associations to tailor information that is both foundational (what is lupus, is it contagious) and in-depth (diet, association with other diseases,..), ensuring that patients can find answers to their most pressing questions. High user engagement with quick answers rather than full explanations also suggests a need for more accessible, concise information on lupus. Conclusion: The data from Lupus100.org allows for the shaping of therapeutic patient education based on the actual questions that patients have. Continual monitoring of the Lupus100 site will help gain further insights to tailor communication efforts to the evolving needs of the community. REFERENCES: NIL. Disclosure of Interests: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies. Acknowledgements: NIL. Disclosure of Interests: None declared.

Systemic lupus erythematosus (SLE) is a disease of high unmet therapeutic need. The challenge of accurately measuring clinically meaningful responses to treatment has hindered progress towards positive outcomes in SLE trials, impeding the approval of potential new therapies. Current primary end points used in SLE trials are based on legacy disease activity measures that were neither specifically designed for the clinical trial context, nor developed according to contemporary recommendations for clinical outcome assessments (COAs), such as that substantial patient input should be incorporated into their design. The Treatment Response Measure for SLE (TRM-SLE) Taskforce is a global collaboration of SLE clinician-academics, patients and patient representatives, industry partners and regulatory experts, established to realize the goal of developing a new COA for SLE clinical trials. The aim of this project is a novel COA designed specifically to measure treatment effects that are clinically meaningful to patients and clinicians, and intended for implementation in a trial end point that supports regulatory approval of novel therapeutic agents in SLE. This Consensus Statement reports the first outcomes of the TRM-SLE project, including a structured process for TRM-SLE development.

Background Despite significant improvements in diagnosis delay and treatment strategies, the burden of Systemic Lupus Erythematosus (SLE) remains high. Objectives The objective of the study was to assess the association between diagnosis delay, disease activity and burden on daily life (BoDL) in a large sample of European patients with SLE. Methods In May 2020, Lupus Europe, the European umbrella patient association for SLE, conducted a multilingual anonymous online cross-sectional study to individuals with a self-reported physician’s diagnosis of SLE living in Europe. The BoDL score was computed using 1 to 5 Likert scales on 5 domains (mobility, anxiety/depression, self-care, daily activities and pain/discomfort) and the sum was transposed on a 0 (minimum Burden on daily life) to 100 (maximum BoDL) scale. Comparisons between independent groups were made using the Mann-Whitney test for continuous outcomes and the Chi-2 test (or Fisher’s exact test) for quantitative data. Results Data of 4,150 SLE patients from 35 European countries were analysed. The mean (±SD) BoDL score in the study population was 37.8 (±18.7) with a modest downward trend of the BoDL based on age (from 33.4% to 42.1% from age less than 25 to age 65 - a loss of up to 9% points over up to 40 years). The diagnosis delay was reported to be <2 years in 1903 participants (47.5%), between 2 and <5 years in 1056 (26.3%) and ≥5 years or more in 1049 (26.2%). 142 did not answer.. Those with a diagnosis of SLE within 2 years of first symptoms had significantly lower mean Burden on daily life scores than those diagnosed after 5 years (33.6 versus 44.0, p<0.001). This trend is deemed robust as it was found across almost all European countries. These results highlight the importance of improving current diagnosis delay for SLE as a way to improve the burden of the disease on daily life. A total of 2980 (71.8%) patients felt that their “lupus has been under control over the last 3 months” while 1166 (28.1%) did not. 4 did not answer. The Burden on daily life score was significantly better in SLE patients feeling that their lupus had been under control during the past 3 months versus the others (34.0% versus 47.6%, p<0.001). Again, this trend was found across almost all European countries. Conclusion This large patient survey reveals both the importance of prompt SLE diagnosis as well the relationship between disease activity and disease burden upon the daily life of European lupus patients. Further improvements should focus on reducing the diagnosis delay and identifying new therapeutic strategies for those with uncontrolled disease. Healthcare pathways, which may accelerate diagnosis and optimize therapeutic management, are necessary to improve patients’ outcomes in SLE. Reference [1]Cornet A, Andersen J, Myllys K, et al Living with systemic lupus erythematosus in 2020: a European patient survey Lupus Science & Medicine 2021;8:e000469. doi: 10.1136/lupus-2020-000469 Acknowledgements: NIL. Disclosure of Interests None Declared.

Background The Patient – Doctor communication gap is often discussed, and is one of the obstacles pointed by patients and doctors alike in the fruitful co-working of optimal treatments. Recognizing the difference between doctors and patients approach when confronted to a lupus flare is critical to bridge this gap and increase the effectiveness of jointly agreed treatment plans. Objectives Identify potential discrepancies between patient and doctors discussion starting points when facing a lupus flare. Are they “talking the same thing?”, “do they have similar concerns in their minds?” Methods As part of the SL Euro lupus 2022 congress 57 participants, doctors and patients, took part in a speed-workshop to identify first “what makes them identify an event as a lupus flare” and then their “key concerns when facing a lupus flare”. Answers were provided on post-its of different colours per type of participants, forcing short answers focusing on key aspects. The commonalities and discrepancies where then identified for further handling. Results A total of 57 statements identifying a lupus flare were collected and classified assessable (visible/ measurable) items, or specific symptoms. The results highlighted that the communication difficulty between patients and doctors starts from the very feeling of what a flare is. 91% of patients include in their recognition of a flare a factor that cannot be “easily” objectivated by a doctor such as fatigue (59.1%), or pain (50%). Only 36% of patients include an externally visible factors, most often fever. In contrast, 88% of doctors require an externally visible/measurable factor to “identify” a flare. These 2 different starting points can create a first communication gap, as well as a difference in the qualification of an event as a flare or not.A total of 93 concerns, sorted in “huge”, “big”, or ”mid” were collected from participants. These items could be classified in 4 key groups: concerns around daily life & logistics; overall anxiety; symptoms and medication. When confronted to an event considered as a flare, patients have a perspective focusing on the impact of flares on their daily life and logistics (35% of huge concerns, 30% of all concerns), and face anxiety over disease/life in the future (30% of all concerns 19% of huge concerns); on the contrary the doctor's focus is on symptoms (67% of huge concerns, 46% of all concerns) and medications (29% of all concerns), with only 7% of the doctors focusing on the patients “immediate” daily life/logistics issues, and 18% on anxiety. This discrepancy of concern also hinders the patient-doctor communication. Conclusion Doctors and Patients starting points and concerns with regards to a lupus flare appear perfectly logical and fitting each individual's role in the relationship, with the doctor's primarily focused on the disease, and the patient on “how to live with it”. However this different view may create an initial gap which needs to be bridged to enhance the therapeutic relationship.Acknowledging the existence of this gap is likely a first step towards an improved patient-doctor communication. REFERENCES: NIL. Acknowledgements: NIL. Disclosure of Interests None Declared.