Exploring The Human Experience Of Congenital Aniridia: A Narrative Medicine Approach
Published 2024 - 42nd Congress of the ESCRS
Reference: FP15.06 | Type: Free paper | DOI: 10.82333/dc1n-qt49
Authors: Chiara Ancona* 1 , Maria Giulia Marini 2 , Maria Csidey 3 , Erika Maka 3 , Tanja Stachon 4 , Fabian Fries 4 , Barbara Poli 5 , Ivana Kildsgaard 6 , Dominique Bremond-Gignac 7 , Nora Szentmary 4 , Neil Lagali 8 , Vito Romano 9
1University of Brescia,Brescia,Italy;ASST Fatebenefratelli Sacco,Milano,Italy, 2Health Care, ISTUD,Milano,Italy, 3Semmelweis University,Budapest ,Hungary, 4Dr. Rolf M. Schwiete Center for Congenital Aniridia and Limbal Stem Cell Research, Saarland University,Homburg/Saar,Germany, 5Aniridia Europe,Venezia,Italy, 6Aniridia Sweden,STOCKHOLM,Sweden, 7Head of Ophthalmology Department,University Hospital Necker Enfants Malades, APHP, and INSERM UMRS 1138, T17,Paris,France, 8Linköping University,Linköping,Sweden, 9University of Brescia,Brescia,Italy
Purpose
To use narrative medicine to explore the illness burden from an emotional and social perspective as experienced by congenital aniridia patients and their caregivers.
Setting
Multicentric observational study
Methods
Patients affected by congenital aniridia and their caregivers were included. Sociodemographic data were collected together with completion of plots of illness with narrative prompts chosen according to the age of the patients and the role of caregiver or patient, that help the person to express themselves. Respondents could finalize their narratives in writing or in an interview. Then, a qualitative analysis was conducted on the narratives.
Results
A total of 58 narratives were collected: 31 narratives of patients and 27 of caregivers. The mean age of patients and caregivers were 32.5 ± 16.7 and 43.6 ± 7.5 years, respectively. 28% of respondents had the centre for aniridia in the same town where they lived. They visited an average of 5.1 ± 5.9 healthcare facilities during their lifetime. Each year an average of 560 ± 932 euros was spent on healthcare visits, with 59% of respondents having additional costs. For 39% of patients and 56% of caregivers aniridia had an impact on their work situation or they lost days of work or school because of aniridia.
Conclusions
Congenital aniridia has a significant impact on vision with progressive visual impairment. Narrative medicine facilitates research into the emotional and social effects of the condition on patients and their caregivers, providing valuable information for clinical practice. This includes identifying their significant concerns and limitations, as well as their needs.