Background The European League Against Rheumatism (EULAR) and national societies have developed many guidelines for the management of rheumatic and musculoskeletal diseases (RMDs). Guidelines are mainly developed to inform practicing health professionals. Information to patients is often outdated and developing principles of these materials are different by countries. This will lead to situation where many patients do not have an adequate understanding of their disease. Regular change of doctors, lower trust in health professionals, alternative therapies and noncompliance with treatment regimens are examples of the consequences.
Objectives To highlight the need for accurate patient information to make informed health decisions and improve health outcomes and collaboration between patients and health professionals.
Methods Scientific wording of professional guidelines is often difficult to understand for lay people. In order to understand the conditions and make decision, patients need accurate information. Every day more and more patient want to be actively involved in shared decision-making. Improvement of health care can be enhanced by developing and disseminating of the lay versions of guidelines among patient organisations and health professionals. Taking into account these issues and the priority of EULAR to promote the dissemination of recommendations among patients, standing committee of PARE initiated a project to prepare a dissemination guide of EULAR recommendations. Systematic Literature Review (SLR) of effective and feasible dissemination strategies to inform and educate patients was used to prepare a practical guide. The task force comprised 7 patient representatives, 3 rheumatologists, 3 health professionals and 1 implementation specialist from 8 European countries .
Results Lay versions of guidelines will help to understand the treatment options and to make informed decisions about the management of the disease. Many countries have different possibilities and principles in patient education and therefore it is very much appreciated to agree on common principles on European level.
Overarching principles of the dissemination according to the PARE task force are:
A) Patient organisations, rheumatologists and other health professionals play a pivotal role in the dissemination of EULAR recommendations among patients.
B) Patients should be involved during the whole process of recommendations development, adaptation and dissemination according to the EULAR recommendations for the inclusion of patient representatives.
Guide can be used by patient organisations and health professionals and includes other 6 principles about development, adaption and dissemination of EULAR recommendations among patients.
Conclusions Collaboration between health professionals and patient organisations is important to stimulate the dissemination of lay versions of guidelines among patients. PARE guide to disseminate lay versions of EULAR guidelines will give a great example how to enhance collaboration to ensure better health outcomes.
M. de Wit, M. Bakker, L. van Bodegom-Vos, M. Buch, N. Caeyers, A. Carluccio, R. Geenen, R. Greiff, B. Glüsing, L. Gossec, A. Kent, K. Otsa, I. Põldemaa, T. Vliet-Vlieland, D. Wiek, K. Schipper.
Disclosure of Interest None declared
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