A systematic review assessing the quality of patient reported outcome measures in ocular surface disease

To identify and assess the quality of currently available validated patient reported outcome measures (PROMs) used to measure the quality of life (QoL) impacts of ocular surface diseases (OSDs).

A literature search was performed in the PubMed, Embase, Scopus, Cochrane Library, and Web of Science databases. Articles reporting on the development, validation, and use of PROMs specific to ocular surface diseases were included for review. The studies were classified based on the target population for which they were developed. Data on content identification, selection, psychometric properties, validity, and reliability were extracted. These data were assessed using the established quality assessment criteria for ophthalmic PROMs. A review of the contents of the PROMs was also performed.

We identified 67 studies that met the inclusion criteria. These studies used 34 unique PROMs including 16 dry eye specific PROMs, 4 contact lens specific PROMs, 1 meibomian gland dysfunction specific PROM, 1 blepharitis specific PROM, 5 Sjögren Syndrome specific PROMs, 4 generic PROMs, 1 computer vision specific PROM, 1 ocular pain specific PROM and 1 bone marrow transplant specific PROM used in ocular graft versus host disease. Testing of psychometric properties for validation was uncommon. Most of the reported data were limited to internal consistency, convergent, and known group validity. The majority (25 out of 34) of the PROMs did not involve patients for content development. Twenty-four PROMs measured symptoms only and the remaining 9 PROMs had items from other QoL domains.

This review provides a current evaluation of extant PROMs for OSD. The assessment of PROMs displayed some strengths but highlighted numerous limitations. Not involving patients for the development of PROM, limited content, inadequately reported or poor psychometric properties, and issues with multidimensionality were the main limitations. Based on this we cannot recommend a single best PROM for measuring OSD-specific QoL. This review underscores the need for the development of a higher quality PROM and suggest directions for future research.