Edoardo Midena1,2, Monica Varano3, Elisabetta Pilotto4, Giovanni Staurenghi5, Monica Camparini6, Alfredo Pece7, Maurizio Battaglia Parodi8, Maria Vadalà9, Simone Donati10, Luisa Frizziero3, Alessandra Fiorencis11, Maria Giulia Marini11, Luigi Reale11. 1. Department of Ophthalmology, University of Padova, Padova, Italy. edoardo.midena@unipd.it. 2. IRCCS - Fondazione Bietti, Rome, Italy. edoardo.midena@unipd.it. 3. IRCCS - Fondazione Bietti, Rome, Italy. 4. Department of Ophthalmology, University of Padova, Padova, Italy. 5. Eye Clinic, Department of Biomedical Clinical Science "Luigi Sacco", University of Milano, Luigi Sacco Hospital, Milan, Italy. 6. Ophthalmology Unit, Department of Biological, Biotechnological and Translational Sciences, University of Parma, Parma, Italy. 7. Department of Ophthalmology, Melegnano Hospital, Milano, Italy. 8. Ophthalmology Department, San Raffaele Hospital, Milano, Italy. 9. Dipartimento di Biomedicina sperimentale e Neuroscience Cliniche, University of Palermo, Palermo, Italy. 10. Ophthalmology Clinic, Department of Medicine and Surgery, University of Insubria, Varese, Italy. 11. Istud Foundation, Milano, Italy.
Abstract
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.
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.
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