The Narrative Medicine Approach in the Treatment of Diabetic Macular Edema: An Italian Experience

Edoardo Midena, Chiara Polo, Luisa Frizziero, Maria Giulia Marini, Rosangela Lattanzio, Maria Vadalà, Elisabetta Pilotto and Monica Varano
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Edoardo Midena: Department of Ophthalmology, University of Padova, 35128 Padova, Italy
Chiara Polo: Department of Ophthalmology, University of Padova, 35128 Padova, Italy
Luisa Frizziero: Department of Ophthalmology, University of Padova, 35128 Padova, Italy
Maria Giulia Marini: Health Care and Wellbeing Area, ISTUD Foundation, 20154 Milan, Italy
Rosangela Lattanzio: Department of Ophthalmology, Scientific Institute Ospedale San Raffaele, University Vita-Salute, 20132 Milan, Italy
Maria Vadalà: Department of Experimental Biomedicine and Clinical Neuroscience, University of Palermo, 90127 Palermo, Italy
Elisabetta Pilotto: Department of Ophthalmology, University of Padova, 35128 Padova, Italy
Monica Varano: IRCCS—Fondazione Bietti, 00198 Rome, Italy

IJERPH, 2022, vol. 19, issue 15, 1-11

Abstract: The study retraces the healthcare pathway of patients affected by diabetic macular edema (DME) through the direct voice of patients and caregivers by using a “patient journey” and narrative method approach. The mapping of the patient’s journey was developed by a multidisciplinary board of health professionals and involved four Italian retina centers. DME patients on intravitreal injection therapy and caregivers were interviewed according to the narrative medicine approach. Narratives were analyzed through a quali-quantitative tool, as set by the narrative medicine method. The study involved four specialized retina centers in Italy and collected a total of 106 narratives, 82 from DME patients and 24 from caregivers. The narratives reported their difficulty in identifying the correct pathway of care because of a limited awareness of diabetes and its complications. Patients experienced reduced autonomy due to ocular complications. In the treatment of diabetes and its complications, a multidisciplinary approach currently appears to be missing. DME reduces the quality of life of affected patients. The narrative medicine approach offers qualitative and emotional patient-guided information. The patient journey provides all of those involved in the management of DME with flowcharts to refer to, identifying the critical points in the healthcare journey of DME patients to improve the management of the disease.

Keywords: narrative medicine; diabetic macular edema; diabetes; patient’s journey; quality of life; caregiver (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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