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Patients' experiences with Behçet's syndrome: structured interviews among patients with different types of organ involvement

1, 2, 3, 4, 5, 6, 7, 8; for the OMERACT Behçet’s Syndrome Working Group

  1. Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, Istanbul, Turkey.
  2. Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, USA.
  3. Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, Istanbul, Turkey.
  4. Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, USA.
  5. Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, USA.
  6. Department of Dermatology, Istanbul University-Cerrahpasa, Istanbul, Turkey.
  7. Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, Istanbul, Turkey. gulenhatemi@yahoo.com
  8. Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, USA.

CER11558 Submission on line
Full Papers

Rheumatology Article

 

Abstract

OBJECTIVES:
Behçet’s syndrome (BS) is a multisystem variable-vessel vasculitis with significant life impact. The aim of this study was to explore the perspectives of patients with BS with different types of organ involvement.
METHODS:
Semi-structured qualitative interviews were conducted with 20 patients with BS with different types of organ involvement. Interviews were audio-recorded, transcribed, and translated into English. A Grounded Theory approach was employed in thematic analysis of translated interviews. Results. Interviews with participants yielded four themes, including symptoms (skin problems, pain, vision problems, fatigue/sleep disturbances, and gastrointestinal/weight loss), impact on function (impact on speech and vision, mobility, energy for tasks, adaptations, and self-care), psychological impact (emotions and emotional management techniques), and social impact (ability to socialize generally and impact on familial relationships).
CONCLUSIONS:
Patients with BS identified several domains, including physical functioning, psychological state, and social identity that are significantly modulated by the symptoms of BS. Those are inter-related with physical symptoms, reflecting the multi-system character of BS, and impair patients’ function impacting on psychological and social identities. This work advances an understanding of BS, and will be useful in developing patient-oriented outcome measures for use in studying BS.

PMID: 31025933 [PubMed]

Received: 24/07/2018 - Accepted : 08/01/2019 - In Press: 12/04/2019