Review
Promoting patients’ empowerment in rheumatic diseases: the perspective of the International Society of Behçet’s Disease Working Group on Patient Empowerment, Adherence to Therapy and Patients’ Education
F. Di Cianni1, D. Marinello2, A. Altenburg3, U. Karacayli4, G. Emmi5, M. Schirmer6, G. Mumcu7, F. Fortune8, R. Talarico9
- Rheumatology Unit, Azienda Ospedaliero-Universitaria Pisana, Pisa, and Department of Medical Biotechnologies, University of Siena, Italy.
- Rheumatology Unit, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy.
- Departments of Dermatology, Venereology, Allergology and Immunology, Brandenburg Medical School Theodor Fontane, Dessau, Germany.
- Department of Oral and Maxillofacial Surgery, Gulhane Faculty of Dentistry, University of Health Sciences, Ankara, Turkey.
- Department of Medical, Surgery and Health Sciences, University of Trieste, and Clinical Medicine and Rheumatology Unit, Cattinara University Hospital, Trieste, Italy; and Centre for Inflammatory Diseases, Monash University Department of Medicine, Monash Medical Centre, Melbourne, Australia.
- Department of Internal Medicine, Medical University of Innsbruck, Austria.
- Department of Dentomaxillofacial Radiology, Dental School, Istanbul Okan University, Istanbul, Turkey.
- The National Behçet's Syndrome Centre of Excellence, Royal London Hospital, Whitechapel, London, UK.
- Rheumatology Unit, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy. sara.talarico76@gmail.com
on behalf of the International Society of Behçet’s Disease (ISBD) Working Group on Patients Empowerment, Adherence to Therapy and Patients’ Education
CER18554
Review
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PMID: 40924663 [PubMed]
Received: 18/01/2025
Accepted : 09/05/2025
In Press: 09/09/2025
Abstract
Behçet’s disease (BD) is a rare multisystemic vasculitis that significantly impacts patients’ quality of life. Effective management of BD requires a patient-centred approach that empowers individuals to actively participate in their care. This work explores the importance of patient empowerment, adherence to treatment, and patient education in BD. The impact of BD on quality of life (QOL) is significant, affecting both physical and psychological well-being. QOL measures are essential in capturing the full burden of the disease from the patient’s perspective, helping guide interventions that can improve disease management. Moreover, treatment adherence remains a major challenge due to various factors, including medication complexity, fear of side effects, and patient perceptions of their health status. Empowerment strategies, including education and emotional support, are crucial to improving adherence and reducing healthcare costs. Empowering BD patients involves fostering a collaborative relationship between healthcare providers and patients, promoting shared decision-making and enhancing patients’ knowledge and skills to manage their condition. Patient education plays a crucial role in empowering patients by providing them with accurate information about the disease, treatment options, and self-management strategies. The International Society for Behçet’s Disease Working Group on Patient Empowerment, Adherence to Therapy, and Patient Education aims to address these issues by developing global strategies to empower BD patients, caregivers and healthcare providers. This initiative promotes collaboration across the BD community, ultimately leading to better patient outcomes and serving as a model for similar efforts in other disease areas.
