Utilising Narrative Medicine to Identify Key Factors Affecting Quality of Life in Dry Eye Disease: An Italian Multicentre Study.

IF 2.6 3区医学 Q2 OPHTHALMOLOGY

Ophthalmology and Therapy Pub Date : 2024-09-28 DOI:10.1007/s40123-024-01033-7

Pasquale Aragona, Stefano Barabino, Ertugrul Akbas, Robert Ryan, Linda Landini, Maria G Marini, Alessandra Fiorencis, Antonietta Cappuccio, Andrea Leonardi, Antonio Vercesi, Rino Frisina, Francesco Bandello, Luigi Berchicci, Emanuela Aragona, Francesco Semeraro, Vito Romano, Igor Di Carlo, Michele Reibaldi, Andrea Ghilardi, Stefano De Cillà, Giorgio Marchini, Daniele Tognetto, Luigi Fontana, Piera Versura, Domenico D'Eliseo, Alessandro Mularoni, Carlo Cagini, Rita Mencucci, Marco Coassin, Antonio Di Zazzo, Stanislao Rizzo, Romina Fasciani, Luca Gualdi, Andrea Cusumano, Leopoldo Spadea, Emily Cantera, Vincenzo Scorcia, Giuseppe Giannaccare, Pasquale Rosa, Salvatore Troisi, Antonio Provenzano, Francesca Simonelli, Michele Marullo, Lorenza Ciracì, Ciro Costagliola, Vito Primavera, Caterina Gagliano, Antonio Pinna, Alessio Giovanni, Francesco Boscia, Aldo Gelso, Leonardo Mastropasqua, Enza Bonfiglio, Maurizio Rolando, Stefano Bonini

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引用次数: 0

Abstract

Introduction: Despite an improved understanding of its pathogenesis, dry eye disease (DED) remains relatively underestimated and its treatment challenging. A better alignment between the clinical evaluation and the patient self-assessment also requires capturing the whole patient experience of DED. This project aimed to unveil this experience through narrative medicine (NM).

Methods: The project involved 38 expert centres in Italy and one in San Marino, targeting adult patients with DED, their informal caregivers and their treating ophthalmologists. Written narratives and sociodemographic and quality of life (QoL)-related data were anonymously collected through the project's webpage. Narratives were analysed through MAXQDA (VERBI Software, Berlin, Germany), NM classifications and content analysis.

Results: A total of 171 patients with DED, 37 informal caregivers and 81 ophthalmologists participated in the research. DED was defined as a disabling condition by 19% of patients and 35% of caregivers; 70% of patients reported that a therapeutic alliance is an integral part of DED treatment and 32% hope for more effective therapies. Forty-four per cent of patients assessed their own QoL as good; however, DED emerged as importantly impacting work performance and social events. DED physical, emotional and economic burden and the cruciality of a trusting care relationship represent the main themes that emerged across all narratives, while empathy and effective treatment are among the factors favouring coping with DED.

Conclusion: This project marked a pioneering initiative investigating the lived experience of patients with DED through NM, simultaneously involving all viewpoints involved in the care pathway. NM enabled the unveiling of factors favouring the ability to cope with DED and its associated QoL implications and provided valuable insights to improve the therapeutic alliance.

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利用叙事医学确定影响干眼症患者生活质量的关键因素：一项意大利多中心研究

简介：尽管人们对干眼症（DED）的发病机理有了更深入的了解，但对其重视程度仍然相对较低，治疗难度也相对较大。要使临床评估与患者自我评估更加一致，还需要捕捉患者对干眼症的整体体验。本项目旨在通过叙事医学（NM）揭示这种体验：该项目涉及意大利的 38 个专家中心和圣马力诺的一个专家中心，目标群体是 DED 成年患者、他们的非正式护理人员和主治眼科医生。书面叙述以及社会人口学和生活质量（QoL）相关数据均通过项目网页匿名收集。叙述内容通过 MAXQDA（VERBI 软件，德国柏林）、NM 分类和内容分析进行分析：共有 171 名 DED 患者、37 名非正式护理人员和 81 名眼科医生参与了研究。19%的患者和35%的护理人员将DED定义为致残性疾病；70%的患者表示治疗联盟是DED治疗不可或缺的一部分，32%的患者希望能有更有效的疗法。44%的患者认为自己的生活质量良好；然而，DED对工作表现和社交活动产生了重要影响。DED带来的身体、情感和经济负担以及信任的护理关系的重要性是所有叙述中出现的主要主题，而移情和有效治疗则是应对DED的有利因素：本项目是通过 NM 调查 DED 患者生活经历的一项开创性举措，同时涉及护理路径中的所有观点。NM 能够揭示有利于应对 DED 的能力及其相关 QoL 影响的因素，并为改善治疗联盟提供有价值的见解。

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来源期刊

Ophthalmology and Therapy OPHTHALMOLOGY-

CiteScore

4.20

自引率

3.00%

发文量

157

审稿时长

6 weeks

期刊介绍： Aims and Scope Ophthalmology and Therapy is an international, open access, peer-reviewed (single-blind), and rapid publication journal. The scope of the journal is broad and will consider all scientifically sound research from preclinical, clinical (all phases), observational, real-world, and health outcomes research around the use of ophthalmological therapies, devices, and surgical techniques. The journal is of interest to a broad audience of pharmaceutical and healthcare professionals and publishes original research, reviews, case reports/series, trial protocols and short communications such as commentaries and editorials. Ophthalmology and Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of quality research, which may be considered of insufficient interest by other journals. Rapid Publication The journal’s publication timelines aim for a rapid peer review of 2 weeks. If an article is accepted it will be published 3–4 weeks from acceptance. The rapid timelines are achieved through the combination of a dedicated in-house editorial team, who manage article workflow, and an extensive Editorial and Advisory Board who assist with peer review. This allows the journal to support the rapid dissemination of research, whilst still providing robust peer review. Combined with the journal’s open access model this allows for the rapid, efficient communication of the latest research and reviews, fostering the advancement of ophthalmic therapies. Open Access All articles published by Ophthalmology and Therapy are open access. Personal Service The journal’s dedicated in-house editorial team offer a personal “concierge service” meaning authors will always have an editorial contact able to update them on the status of their manuscript. The editorial team check all manuscripts to ensure that articles conform to the most recent COPE, GPP and ICMJE publishing guidelines. This supports the publication of ethically sound and transparent research. Digital Features and Plain Language Summaries Ophthalmology and Therapy offers a range of additional features designed to increase the visibility, readership and educational value of the journal’s content. Each article is accompanied by key summary points, giving a time-efficient overview of the content to a wide readership. Articles may be accompanied by plain language summaries to assist readers who have some knowledge of, but not in-depth expertise in, the area to understand the scientific content and overall implications of the article. The journal also provides the option to include various types of digital features including animated abstracts, video abstracts, slide decks, audio slides, instructional videos, infographics, podcasts and animations. All additional features are peer reviewed to the same high standard as the article itself. If you consider that your paper would benefit from the inclusion of a digital feature, please let us know. Our editorial team are able to create high-quality slide decks and infographics in-house, and video abstracts through our partner Research Square, and would be happy to assist in any way we can. For further information about digital features, please contact the journal editor (see ‘Contact the Journal’ for email address), and see the ‘Guidelines for digital features and plain language summaries’ document under ‘Submission guidelines’. For examples of digital features please visit our showcase page https://springerhealthcare.com/expertise/publishing-digital-features/ Publication Fees Upon acceptance of an article, authors will be required to pay the mandatory Rapid Service Fee of €5250/$6000/£4300. The journal will consider fee discounts and waivers for developing countries and this is decided on a case by case basis. Peer Review Process Upon submission, manuscripts are assessed by the editorial team to ensure they fit within the aims and scope of the journal and are also checked for plagiarism. All suitable submissions are then subject to a comprehensive single-blind peer review. Reviewers are selected based on their relevant expertise and publication history in the subject area. The journal has an extensive pool of editorial and advisory board members who have been selected to assist with peer review based on the afore-mentioned criteria. At least two extensive reviews are required to make the editorial decision, with the exception of some article types such as Commentaries, Editorials, and Letters which are generally reviewed by one member of the Editorial Board. Where reviewer recommendations are conflicted, the editorial board will be contacted for further advice and a presiding decision. Manuscripts are then either accepted, rejected or authors are required to make major or minor revisions (both reviewer comments and editorial comments may need to be addressed). Once a revised manuscript is re-submitted, it is assessed along with the responses to reviewer comments and if it has been adequately revised it will be accepted for publication. Accepted manuscripts are then copyedited and typeset by the production team before online publication. Appeals against decisions following peer review are considered on a case-by-case basis and should be sent to the journal editor. 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Please follow the link for further information on preprint sharing: https://www.springer.com/gp/authors-editors/journal-author/journal-author-helpdesk/submission/1302#c16721550 Copyright Ophthalmology and Therapy''s content is published open access under the Creative Commons Attribution-Noncommercial License, which allows users to read, copy, distribute, and make derivative works for non-commercial purposes from the material, as long as the author of the original work is cited. The author assigns the exclusive right to any commercial use of the article to Springer. For more information about the Creative Commons Attribution-Noncommercial License, click here: http://creativecommons.org/licenses/by-nc/4.0. Contact For more information about the journal, including pre-submission enquiries, please contact christopher.vautrinot@springer.com.