The Co-Creation of a Patient Information Leaflet for Patients With the Rare Eye Infection <i>Acanthamoeba</i> keratitis-Reference-Cited by-同舟云学术

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

Published:2022-01 Issue: Volume:9 Page:237437352211030
ISSN:2374-3735
Container-title:Journal of Patient Experience
language:en
Short-container-title:Journal of Patient Experience

Author:

Ekkeshis Irenie¹²,Mason Melanie²,Watson Martin²,Rowan Bryony²,Carnt Nicole²³⁴⁵^ORCID

Affiliation:

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.

Publisher

SAGE Publications

Subject

Health Policy,Health (social science),Leadership and Management

Link

http://journals.sagepub.com/doi/pdf/10.1177/23743735221103031

Reference16 articles.

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3. Impact of Acanthamoeba Keratitis on the Vision-Related Quality of Life of Contact Lens Wearers

4. Acanthamoeba Keratitis: Perspectives for Patients

5. Acanthamoeba keratitis in England and Wales: incidence, outcome, and risk factors