Real-life patient journey in neovascular age-related macular degeneration: a narrative medicine analysis in the Italian setting

• Published in: Eye (London) Vol. 36; no. 1; pp. 182 - 192
• Main Authors: Midena, Edoardo, Varano, Monica, Pilotto, Elisabetta, Staurenghi, Giovanni, Camparini, Monica, Pece, Alfredo, Battaglia Parodi, Maurizio, Vadalà, Maria, Donati, Simone, Frizziero, Luisa, Fiorencis, Alessandra, Marini, Maria Giulia, Reale, Luigi
• Format: Journal Article
• Language: English
• Published: London Nature Publishing Group UK 01.01.2022; Nature Publishing Group
• Subjects: 692/308/409; 692/699/3161/3175; 692/700/784; Age; Angiogenesis Inhibitors - therapeutic use; Health care; Humans; Intravitreal Injections; Laboratory Medicine; Macular degeneration; Macular Degeneration - drug therapy; Medicine; Medicine & Public Health; Narrative Medicine; Narratives; Ophthalmology; Patients; Pharmaceutical Sciences/Technology; Quality of Life; Ranibizumab - therapeutic use; Retina; Surgery; Surgical Oncology; Vascular endothelial growth factor; Vascular Endothelial Growth Factor A - therapeutic use; Wet Macular Degeneration - diagnosis; Wet Macular Degeneration - drug therapy
• ISSN: 0950-222X; 1476-5454; 1476-5454
• DOI: 10.1038/s41433-021-01470-9

Objectives To investigate the real-life experience of patients affected by neovascular age-related macular degeneration (nAMD), in the healthcare pathway for the management of the disease, using a “patient journey” and narrative method approach. Methods The patient journey of subjects affected by nAMD was designed using a process-mapping methodology involving a team from 11 Italian centres. Subsequently, narratives were collected from nAMD patients and family members. The interviews were analyzed using the narrative medicine methodology. Results Eleven specialized retina centres across Italy were involved and 205 narratives collected. In 29% of cases, patients underestimated their symptoms or attributed them to non-pathological causes, thus delaying the specialist consultation. The delay in accessing to care was due to a lack of awareness of this disease (50% of the participants didn’t know what nAMD is) and to critical issues faced at first visit (long waiting lists, failed diagnosis, underestimation of the problem). Despite anti-VEGF therapies were perceived as effective in improving or stabilizing vision in 91% of narratives collected, 77% of patients still reduced or ceased daily activities such as reading and driving. Within the pathway of care there was not a multidisciplinary approach, and the patients were treated just by the ophthalmologist. Conclusions nAMD may significantly affect the quality of life of affected patients, both from a functional and psychological point of view. The narrative medicine approach highlights some critical points in the healthcare journey of nAMD patients and represents a useful background in implementing patient management algorithms and pathways of care.