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

Journal of Patient Experience

卷:9

Patient Experience Research Brief

Irenie Ekkeshis²  Nicole Carnt^3,4,5 

[1] UNSW, Sydney, Australia

[2] , London, UK

[3] University College London, London, UK

[4] New Citizenship Project, London, UK

[5] University of Sydney, Sydney, Australia

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

DOI  :  10.1177/23743735221103031

来源: Sage Journals

【 摘 要 】

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.

【 授权许可】

CC BY-NC   
© The Author(s) 2022