Keeping a PROMise: embedding patient voices in ophthalmic outcomes

Patient-reported outcome measures (PROMs) are typically acquired from standardized questionnaires designed to capture patients' own perspectives on their health, symptoms, functioning, and quality of life (QoL).Unlike clinician-assessed endpoints, PROMs are meant to provide a direct account of how disease and treatment affect daily living and wellbeing.In a 2013 BMJ commentary, Nick Black argued that PROMs could transform healthcare by, for example, making it more patient-centred and enabling benchmarking of provider performance [1].Black called not only for PROMs to be used as trial endpoints but also for their integration into clinical practice and health system evaluation.A BMJ commentary, cited more than 2,000 times, is hard to ignore.Yet, more than a decade later, ophthalmology has been slow in the uptake of this idea as evidenced by two articles published in this issue of BJO.In the first of these publications, Li and colleagues present a rigorous systematic review of ophthalmology randomized controlled trials published between 2014 and 2023.Of 333 eligible trials, only 26% included PROMs, and just 8% designated them as primary outcomes.[2] The authors make a persuasive case for more systematic inclusion of PROMs in ophthalmic trials, noting that current studies often emphasize structural or clinical endpoints that may not reflect patients' lived experiences.In a well put together short report in this same issue, Ernst and colleagues examine the use of PROMs in routine ophthalmic care across the UK, Germany, and Switzerland, finding that only 31% of surveyed ophthalmologists reported employing them, mostly in cataract services.[3] Adoption was limited not by lack of perceived value but by practical barriers such as staff workload, patient burden, and uncertainty about instrument selection.Together, these studies indicate that while the promise of PROMs is widely recognized, ophthalmology continues to struggle with embedding these methods of capturing the patient's voice into both research and clinical practice.What follows in this commentary is drawn mainly from my own experience with PROMs in research and trial design, offering only a personal glimpse into some of the complexities involved.