Background: Systemic Auto-Immune Diseases are chronic conditions that significantly impact patients’ quality of life and reported outcomes. While standard therapy is essential, it often falls short of addressing the broader challenges patients face, including daily management and the psychosocial burden of living with complex and frequently misunderstood conditions. Misconceptions about these diseases further complicate patient and family understanding, necessitating complementary measures to improve disease management and enhance patient empowerment.

Objectives: In this context, the Tunisian Association of Young Internists launched a national initiative to create four therapeutic educational booklets for patients with Systemic Lupus Erythematosus (SLE), Behçet’s disease (BD), Sjögren’s syndrome (SS), and Systemic Sclerosis (SSc). This project aims to provide clear, accurate, and accessible information to support patients in better understanding and managing their conditions.

Methods: The project was launched in August 2020 with a planned duration of four years, following a structured methodology for the development of each educational booklet. An initial call for volunteers was disseminated through mass emails and social media, complemented by specific invitations to national experts to join the editorial and review committees for each booklet. Submissions were reviewed to ensure diverse representation within each committee, with members selected based on their specialties relevant to the disease. The drafting process began with an initial meeting to outline the booklet structure and divide it into chapters. Each committee was subdivided into teams to work on individual chapters. Multiple review meetings were conducted to validate the chapters and finalize the content. Once drafted, the design was developed, reviewed, and approved by the editorial committee. Final validation was achieved in two stages: first by the Tunisian Society of Internal Medicine, then by national patient associations specific to each disease. For each pathology, a group of 10 patients proposed revisions until unanimous approval was reached, leading to the final production of the booklet.

Results: Across the four booklets, the editorial committees consisted of specialists from internal medicine, rheumatology, pulmonology, psychiatry, nephrology, ophthalmology, stomatology, physical medicine and rehabilitation, and dermatology. Regional diversity was ensured, and each committee included at least four fellows in training and four patients. In total, there were 78 memberships across the editorial committees, 65 memberships in the reviewing teams, 39 physical and virtual editorial meetings, and 53 patients involved in drafting, reviewing, promoting, and presenting the booklets. The educational booklet for SLE was launched on May 19, 2022, during Lupus Awareness Month. The launch included a national Lupus awareness day with conferences, workshops, and booklet distribution across the country. The booklet covered a general definition of SLE, signs of the disease, factors triggering flares, and explanations about pregnancy and breastfeeding, addressing common misconceptions. It also provided a guide for managing pregnancy and breastfeeding, tips for living with the disease, and recommendations on exercises, dietary habits, and meditation. The educational booklet for BD was launched on March 19, 2023, during a national conference. It provided a general definition of the disease, addressed misconceptions, described signs and flare triggers, and offered daily tips for managing and living with the condition. The educational booklet for SSc was launched on September 18, 2024, during a national conference. In addition to general chapters explaining the disease and management tips, the booklet featured auto-reeducation exercises for the body, hands, and face, with and without tools, along with dental care advice. It also addressed acceptance of and adaptation to skin changes associated with SSc through meditation and body scan exercises. The educational booklet for SS was launched on October 2, 2024. It included general explanations and advice, with a focus on managing sicca syndrome. The booklet offered hygiene tips, self-massage techniques for salivary glands to alleviate symptoms, oral and dental care advice, and guidance on managing psychological impacts and fatigue associated with the condition. Bas du formulaireAll booklets were written in Arabic and French, with the educational booklet on SSc also translated into English.

Conclusion: This project demonstrates the value of a collaborative, multidisciplinary approach to developing patient-centered educational resources. By addressing specific needs and misconceptions in systemic autoimmune diseases, these booklets empower patients, improve disease understanding, and support daily management.

Figure 1.

Covers of the four systemic autoimmune diseases patient educational booklets of the Tunisian Association of Young Internists

REFERENCES: NIL.

Acknowledgements: We thank the Tunisian Society of Internal Medicine for its help and support. We thank patients associations including: Lina Ben Mhenni Patient Association, Wejden Patient Associaiton, Tunisian Association of Behçet Disease Patients, Tunisia Scelroderma Group and Tunisia Sjogren’s Group and thank all the patients that participated in the realisation of this project.

Disclosure of Interests: None declared.

© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.