The Co-Creation of a Patient Information Leaflet for Patients With the Rare Eye Infection Acanthamoeba keratitis

Irenie Ekkeshis; Melanie Mason; Martin Watson; Bryony Rowan; Nicole Carnt

doi:10.1177/23743735221103031

The Co-Creation of a Patient Information Leaflet for Patients With the Rare Eye Infection Acanthamoeba keratitis

J Patient Exp. 2022 Jun 29:9:23743735221103031. doi: 10.1177/23743735221103031. eCollection 2022.

Authors

Irenie Ekkeshis^{1

2}, Melanie Mason², Martin Watson², Bryony Rowan², Nicole Carnt^{2

3

4

5}

Affiliations

¹ New Citizenship Project, London, UK.
² Moorfields Eye Hospital NHS Foundation Trust, London, UK.
³ UNSW, Sydney, Australia.
⁴ University of Sydney, Sydney, Australia.
⁵ University College London, London, UK.

Abstract

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.

Keywords: co-creation; eye; infection; patient engagement; patient perspectives/narratives; quality of life; survey; vision.