The Co-Creation of a Patient Information Leaflet for Patients With the Rare Eye Infection Acanthamoeba keratitis.
Irenie EkkeshisMelanie MasonMartin WatsonBryony RowanNicole A CarntPublished in: Journal of patient experience (2022)
Acanthamoeba keratitis (AK) is a rare but severe eye disease. A research engagement event, "The Cornea Day," in London, UK in 2013, identified the lack of credible information about AK and a need for practical day to day management strategies. Experiences of 15 AK patients attending The Cornea Day were distilled into a survey that was administered to a wider group of 76 patients, carers, researchers, and clinicians. A Patient Information Leaflet was cocreated and then represented to additional patients for final modification. The AK Patient Leaflet (revised 2019) is available in several languages and used globally.