Exploring disease perception in Behçet's syndrome: combining a quantitative and a qualitative study based on a...

Area of Science:

• Rheumatology
• Psychology
• Sociology

Background:

• Behçet Syndrome (BS) significantly impacts patients, caregivers, and families psychologically and socially.
• Understanding patient disease perception is crucial for improving care.
• Previous research has not fully explored the lived experiences of BS patients.

Purpose of the Study:

• To explore disease perception in Behçet Syndrome (BS) patients.
• To identify patient groups with diverse disease perceptions.
• To understand the psychological and social impact of BS on patients' daily lives.

Main Methods:

• Co-designed survey with BS experts, patients, and caregivers.
• Online questionnaires administered to adult BS patients.
• Cluster analysis for survey data, and text, sentiment, and qualitative analysis for patient stories.

Main Results:

• Disease acceptance strongly influences daily life, self-perception, and future hope in BS patients.
• Patients reported a long, complex, and exhausting diagnostic journey.
• Narrative analysis revealed common themes in patients' lived experiences.

Conclusions:

• This study is the first to apply narrative medicine principles to Behçet Syndrome (BS) disease perception.
• Patient perceptions highlight the need for collaborative efforts between the scientific and patient communities.
• Improving the patient journey requires addressing psychological and social impacts.