Ophthalmology and Therapy (Nov 2023)

Knowledge and Current Practices in Monogenic Uveitis: An International Survey by IUSG and AIDA Network

  • Carla Gaggiano,
  • Vishali Gupta,
  • Rupesh Agrawal,
  • Marc D. De Smet,
  • Bruno Frediani,
  • Gian Marco Tosi,
  • Maria Pia Paroli,
  • Sudharshan Sridharan,
  • Carlos E. Pavesio,
  • Uwe Pleyer,
  • Ekaterina V. Denisova,
  • Kalpana Babu,
  • Alejandra de-la-Torre,
  • Peizeng Yang,
  • Janet L. Davis,
  • Emmett T. Cunningham,
  • Ester Carreño,
  • Debra Goldstein,
  • Alex Fonollosa,
  • Luca Cantarini,
  • Lucia Sobrin,
  • Claudia Fabiani

DOI
https://doi.org/10.1007/s40123-023-00839-1
Journal volume & issue
Vol. 13, no. 1
pp. 127 – 147

Abstract

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Abstract Introduction This study aims to explore awareness, knowledge, and diagnostic/therapeutic practices in monogenic uveitis (mU) among uveitis experts. Methods This is an explorative, cross-sectional survey study. An anonymous, semi-structured, electronic survey was delivered to uveitis experts from the Autoinflammatory Diseases Alliance (AIDA) Network and International Uveitis Study Group (IUSG). We included respondents answering ≥ 50% of the survey. Results Seventy-seven participants rated their knowledge of mU as proficient (3.9%), adequate (15.6%), sufficient (16.9%), or poor (63.6%). When asked about the first mU gene they thought of, 60.4% mentioned NOD2, 3.9% mentioned NLRP3 or MEFV, and 49.4% provided incorrect or no answers. Success rates in clinical scenarios varied from 15.6% to 55.8% and were higher for ophthalmologists working in multidisciplinary teams (p 0.05). The public healthcare system ensured a higher percentage of tests prescribed were obtained by patients compared to private insurances (p < 0.00). In terms of disease-modifying anti-rheumatic drugs (DMARDs), tumor necrosis factor-α inhibitors were the most familiar to uveitis experts. The difficulties with off-label therapy procedures were the primary barrier to DMARDs prescription for patients with mU and correlated inversely with the obtained/prescribed drug ratio for interleukin-1 (p < 0.01) and interleukin-6 (p < 0.01) inhibitors. Conclusions This survey identifies proficiency areas, gaps, and opportunities for targeted improvements in patients care. The comprehensive outputs may inform evidence-based guidelines, empowering clinicians with standardized approaches, and drive an AIDA Network—IUSG unified effort to advance scientific knowledge and clinical practice.

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