Abstract
Purpose:
Unifying terminology to stage disease is vital for standardising descriptions of patients in a clinical setting, determining treatment response, and ensuring robust outcomes for collaborative clinical research. Such indices are defined as manifestations that represent (i) activity: reversible resulting directly from the inflammatory process or (ii) damage: persistent (> 6 months duration) changes in anatomy, physiology, pathology or function which result from previously active disease where changes are cumulative and irreversible. The purpose of this study was to obtain consensus on a set of core domains for ocular surface disease (OSD) and measures for the assessment of disease activity and damage thereby defining the initial steps towards developing an agreed OSDISS.
Methods:
An anonymized online questionnaire was distributed to an international group of OSD specialists and advisory groups in uveitis and oculoplastics. Recipients were asked to rank 76 agreed indices over 5 domains: eyelids, tear-film, conjunctiva, cornea and sclera/anterior chamber (AC) in the context of considering 8 named common/important OSDs. Indices where >75% of responses were ranked as either useful/very useful or not useful/moderately useful were included or excluded, respectively. Equivocal responses were electronically and anonymously arbitrated by a pre-determined OSD Expert Group (20 experts). Activity/damage and tools to measure each included parameter, were considered in a final round of voting.
Results:
53 experts (40 OSD, 8 uveitis, 5 oculoplastics) from 8 countries took part in the consensus exercise. 75% agreement was achieved for 52/76 parameters with a further 14 equivocal indices and 1 novel scale included after arbitration. All remaining equivocal indices formed ‘2nd tier’ assessment. Similarly, 22 grading tools were included by vote. The final list of indices (tools) comprised 21(3) eyelid, 3(4) tear-film, 17(3) conjunctiva, 15(10) cornea and 11(2) sclera/AC. Of these14 were considered as measures of clinical activity, 24 as damage and 51 as measures of both activity and damage.
Conclusions:
This is the first internationally agreed consensus of putative descriptors of OSD and discriminating measures of activity and damage. The consensus affords a platform for the development of scoring systems relevant to OSD and validation in defined patient cohorts.
Keywords: 474 conjunctiva •
486 cornea: tears/tear film/dry eye •
526 eyelid