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

Autor: 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
Jazyk: angličtina
Rok vydání: 2024
Předmět:
Zdroj: Ophthalmology and Therapy, Vol 13, Iss 11, Pp 2965-2984 (2024)
Druh dokumentu: article
ISSN: 2193-8245
2193-6528
DOI: 10.1007/s40123-024-01033-7
Popis: 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.
Databáze: Directory of Open Access Journals
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