A Comprehensive Patient-Centric Analysis of Disease Burden, Treatment Challenges, and Unmet Needs in Behçet’s Disease: Insights from a Large Cohort Study

TL;DR

This study highlights the physical, psychological, and social challenges faced by Behçet’s disease patients, emphasizing the need for better communication and treatment approaches.

Contribution

The study provides a patient-centric analysis of Behçet’s disease burden and unmet needs through a large multinational cohort.

Findings

Severe fatigue and neurological symptoms are major issues underestimated by healthcare providers.

Psychological distress and treatment side effects are common, leading to treatment discontinuation.

Patients desire better communication, symptom validation, and comprehensive disease education.

Abstract

Background and Objectives: Behçet’s disease (BD) is a multisystem inflammatory disorder with significant physical, psychological, and social burdens. However, patient-reported outcomes and subjective symptom experiences remain under-recognized in clinical practice. This study aimed to provide a patient-centric analysis of the disease burden, treatment challenges, and unmet needs in BD. Materials and Methods: A multinational cross-sectional study was conducted using a structured questionnaire among 528 BD patients recruited from online support groups and a specialized clinic. The questionnaire gathered information about participants’ backgrounds, medical histories, how symptoms affected them, psychological and social factors, side effects of treatments, and their suggestions for better care. Data were analyzed descriptively. Results: The mean age of the participants was 41.4 years, and 69.3% were male. The most common symptoms that significantly affected daily life were severe fatigue (82.8%), joint pain and swelling (79.0%), and neurological issues (74.1%). Nearly half of patients perceived that fatigue (49.1%) and neurological symptoms (45.1%) were underestimated by healthcare providers. Psychological distress was prevalent, with 74.1% of participants reporting either depression or anxiety. Side effects related to treatment were frequently encountered (56.3%), resulting in treatment discontinuation for 53.4% of the individuals. The main unmet needs identified were fatigue reduction (59.1%), pain management (43.0%), and the minimization of side effects (59.1%). Furthermore, patients expressed a desire for enhanced communication (62.9%), validation of their unobserved symptoms (74.1%), and comprehensive disease education (67.6%). Conclusions: BD imposes a profound multidimensional burden, with a significant disconnect between patient experiences and their perception of clinical recognition. Fatigue, pain, psychological distress, and treatment-related challenges contribute substantially to unmet needs. A patient-centered approach emphasizing communication, symptom validation, and holistic support is essential to improving care and quality of life in BD.

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