Abstract
Background Systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) have a high disease burden which cannot be sufficiently alleviated with pharmacological treatment alone. In summer 2023 EULAR recommendations for non-pharmacological management of SLE and SSc were published https://doi.org/10.1136/ard-2023-224416.
Dissemination and implementation of the recommendations into daily clinical practice is crucial due to the impact on patients QoL and on a holistic management of these diseases.
Methods We first aim at raising awareness of the recommendations to ensure adoption in clinical practice.
Twelve European national teams consisting of patient representatives, Health professionals (HPRs), and physicians engaging in the care of people with SLE and SSc have been formed.
Each national team will disseminate the recommendations, e.g., in the form of translations, publications, mailings, presentations (step 1).
An online survey (step 2) will be prepared, translated, checked by native speakers, and pilot-tested in a smaller group of patients. The survey gauges both the professional and experiential opinion of stakeholders’ perceived alignment of each recommendation with current clinical practice in their respective countries. The survey will be circulated to SLE and SSc patients, HPRs, and physicians. Qualitative data will be translated, checked by native speakers, and analysed using qualitative methodology. Project reports results including the result of the analysis will be published both at national, and global level (step 3).
The role of patient representative is key in all the steps.
Results The first twelve national teams were formed in Switzerland, Austria, Belgium, Germany, Greece, Hungary, Italy, Portugal, Sweden, United Kingdom, Denmark, the Netherlands. The congress is the occasion for discussing the EULAR recommendations, showing the first results of the national teams disseminating the recommendations and inviting stakeholders from other countries to participate in the project and in its next steps.
Conclusions This project aims to provide a foundation for disseminating and implementing the recent published EULAR recommendations for the non-pharmacological management of SLE and SSc. All stakeholder groups involved can use their network to disseminate the recommendations and amplify the reach of the recommendations in a multi-tiered approach. In this action research, the role of patient representatives is key.
