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

Edoardo Midena, Monica Varano, Elisabetta Pilotto, Giovanni Staurenghi, Monica Camparini, Alfredo Pece, Maurizio Battaglia Parodi, Maria Vadalà, Simone Donati, Luisa Frizziero, Alessandra Fiorencis, Maria Giulia Marini, Luigi Reale

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish
Pages (from-to)182-192
Number of pages11
JournalEye (Basingstoke)
Issue number1
Publication statusPublished - Jan 2022

ASJC Scopus subject areas

  • Ophthalmology
  • Sensory Systems


Dive into the research topics of 'Real-life patient journey in neovascular age-related macular degeneration: a narrative medicine analysis in the Italian setting'. Together they form a unique fingerprint.

Cite this