为患有罕见眼部感染性角膜炎的患者共同创作一份患者信息手册。
The Co-Creation of a Patient Information Leaflet for Patients With the Rare Eye Infection keratitis.
作者信息
Ekkeshis Irenie, Mason Melanie, Watson Martin, Rowan Bryony, Carnt Nicole
机构信息
New Citizenship Project, London, UK.
Moorfields Eye Hospital NHS Foundation Trust, London, UK.
出版信息
J Patient Exp. 2022 Jun 29;9:23743735221103031. doi: 10.1177/23743735221103031. eCollection 2022.
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.
棘阿米巴角膜炎（AK）是一种罕见但严重的眼部疾病。2013年在英国伦敦举办的一次研究活动“角膜日”发现，关于棘阿米巴角膜炎缺乏可靠信息，且需要日常实用的管理策略。参加“角膜日”的15名棘阿米巴角膜炎患者的经历被提炼成一项调查，并对76名更广泛的患者、护理人员、研究人员和临床医生进行了调查。共同创作了一份患者信息手册，然后向更多患者展示以进行最终修改。《棘阿米巴角膜炎患者手册》（2019年修订版）有多种语言版本，在全球范围内使用。
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