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患者对干眼症和慢性眼表疼痛的看法:来自虚拟社区主持对话的见解。

Patient perspectives on dry eye disease and chronic ocular surface pain: Insights from a virtual community-moderated dialogue.

作者信息

Caffery Barbara, Petris Rebecca, Hammitt Katherine M, Montecchi-Palmer Michela, Haque Sameena, Malkowski Jean-Pierre, Barabino Stefano

机构信息

Toronto Eye Care, Toronto, ON, Canada.

The Dry Eye Foundation, Poulsbo, WA, USA.

出版信息

Eur J Ophthalmol. 2022 Sep 7:11206721221125263. doi: 10.1177/11206721221125263.

DOI:10.1177/11206721221125263
PMID:36071618
Abstract

PURPOSE

To understand patients' perspectives on living with dry eye disease (DED), and on the unmet needs in DED and chronic ocular surface pain (COSP) management.

METHODS

A moderated, structured discussion with patients with ocular surface diseases and healthcare professionals (HCPs) was conducted using a virtual platform to capture patients' journey with DED, their opinion on unmet needs, and design and conduct of clinical trials in DED and COSP.

RESULTS

Nine participants, including four patient representatives from patient organisations, one ophthalmologist and one optometrist participated in the discussion. Patients had DED of varying severity and aetiology; three patients had Sjögren's. Over 4 weeks, 785 posts were entered on the platform. Prior to diagnosis, patients rarely associated their symptoms with DED. Convenience and symptomatic relief scored higher than treating the disease. Patients expressed the need for plain language information and dialogue with knowledgeable and sensitive HCPs. Online forums and social media were suggested as key recruitment resources, whereas convenience and safety concerns were highlighted as main barriers to enrolment. The need for the inclusion of outcome measures that have a real impact on patients' experience of their condition was highlighted. Both target product profiles were received positively by participants, highlighting the twice-daily dosing regimen and convenience of the products. Participants acknowledged the value of digital tools and suggested the need to feel valued post-trial.

CONCLUSIONS

This moderated dialogue provided actionable insights on the unmet needs in DED and useful inputs for consideration when designing future clinical trials for DED and COSP.

摘要

目的

了解干眼症(DED)患者对其生活状况的看法,以及对DED和慢性眼表疼痛(COSP)管理中未满足需求的看法。

方法

使用虚拟平台与眼表疾病患者和医疗保健专业人员(HCPs)进行了一场有主持人的结构化讨论,以了解患者的DED病程、他们对未满足需求的看法,以及DED和COSP临床试验的设计与开展情况。

结果

九名参与者参加了讨论,其中包括来自患者组织的四名患者代表、一名眼科医生和一名验光师。患者患有不同严重程度和病因的DED;三名患者患有干燥综合征。在四周时间里,平台上共输入了785条帖子。在诊断之前,患者很少将其症状与DED联系起来。便利性和症状缓解的评分高于疾病治疗。患者表示需要通俗易懂的信息,以及与知识渊博且善解人意的HCPs进行对话。在线论坛和社交媒体被建议作为关键的招募资源,而便利性和安全问题则被突出为招募的主要障碍。强调了需要纳入对患者病情体验有实际影响的结局指标。两种目标产品简介均得到参与者的积极认可,突出了产品每日两次的给药方案和便利性。参与者认可数字工具的价值,并建议在试验后需要有被重视的感觉。

结论

这场有主持人的对话为DED中未满足的需求提供了可采取行动的见解,并为未来设计DED和COSP临床试验时的考虑提供了有用的意见。

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