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Epidemiology and outcomes
Original research
Rheumatologists’ perspective on hydroxychloroquine guidelines
  1. James Winebrake1,
  2. Leila Khalili2,
  3. Julia Weiner2,
  4. Yevgeniya Gartshteyn2,
  5. Lisa Park3 and
  6. Anca D Askanase2
  1. 1Weill Cornell Medical College, New York City, New York, USA
  2. 2Rheumatology, Columbia University Irving Medical Center, New York City, New York, USA
  3. 3Ophthalmology, Columbia University Irving Medical Center, New York City, New York, USA
  1. Correspondence to Dr Anca D Askanase; ada20{at}cumc.columbia.edu

Abstract

Objective Hydroxychloroquine (HCQ) retinal toxicity is an ongoing concern for rheumatologists. The revised 2016 American Academy of Ophthalmology (AAO) guidelines created controversy regarding the correct dosing and evaluation of HCQ toxicity. The current study was initiated to further understand rheumatologists’ practices regarding HCQ.

Methods A questionnaire-based survey was distributed electronically to rheumatologists. We collected information on HCQ dosing, clinical decision-making processes, familiarity with the AAO 2016 guidelines, and perceived disparities between the AAO 2016 guidelines and rheumatological clinical practice.

Results 78 rheumatologists completed the survey (49% from USA, 90% academic practices, 82% self-identified as lupus experts). Only lupus expert (n=64) data were included in subsequent analysis. The mean cohort size was 747 (50–6571), a total cohort 45 612 patients. HCQ was prescribed to >75% of patients with SLE by 81.3% of SLE experts, with routine counselling about ophthalmic risks. The typical dose of HCQ used was 200–400 mg/day. 17% of rheumatologists use doses up to 600 mg/day, while 6.2% use up to 6.5 mg/kg/day. HCQ adherence is routinely assessed. 479 cases of HCQ retinal toxicity (1.05%) and 9 cases of HCQ-associated blindness (1.8 per 10 000 patients) were reported. 89.1% of respondents reported familiarity with the AAO guidelines. Those aware of the guidelines cited limited dosing options (54.7%), lack of supporting evidence (57.8%) and low patient adherence (43.8%) as obstacles to greater implementation of the guidelines.

Conclusion These data suggest that HCQ toxicity and blindness are rare in patients with SLE. Rheumatologists treating patients with SLE are aware of the guidelines and appreciate the importance of partnering with ophthalmologists in preventing retinal toxicity.

  • lupus erythematosus
  • systemic
  • therapeutics
  • antirheumatic agents
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/lupus-2020-000427

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    Footnotes

    • LP and ADA are joint senior authors.

    • JW and LK contributed equally.

    • Contributors ADA and LP were involved in the planning/development of the study, study design, survey development, data collection, data analysis and interpretation, as well as drafting of the manuscript. JM, LK and JW were involved in data analysis, interpretation of data and drafting of the manuscript. YG was involved in interpretation of data and drafting of the manuscript.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval This study was determined to be exempt by the Columbia University Institutional Review Board.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available upon reasonable request. Requests may be made to ADA at ada20@cumc.columbia.edu.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.