Observational studyEuropean journal of ophthalmology2026
Exploring the human experience of congenital aniridia: A narrative medicine approach.
Observational study in European journal of ophthalmology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed.
- The impact of vision impairment on living with congenital aniridia: a pan-European survey study.Orphanet journal of rare diseases · 2026Article
Corrections and comments
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Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
PurposeTo explore the emotional and social burden of congenital aniridia in patients and caregivers through narrative medicine.MethodsPatients with congenital aniridia and their caregivers were enrolled in a multicentric observational study. Sociodemographic data and personal narratives were collected through interviews or written accounts. A qualitative analysis was conducted and overarching themes identified.ResultsA total of 57 narratives were collected (31 patients, 27 caregivers). Participants reported visiting an average of 5.1 ± 5.9 healthcare facilities over their lifetime. Aniridia impacted work or school life in 39% of patients and 58% of caregivers. Most narratives focused on the lived experience of illness (95% patients, 81% caregivers) or on social perception (48% and 46%), rather than on clinical aspects (10% and 23%). Adaptation to the disease was mainly stable or progressive among adults. Emerging themes included independence, feeling misunderstood, and bullying. Caregivers emphasized the lack of specialized centers, standardized protocols, adequately trained professionals, psychological and practical support, and the lack of humanity among doctors.ConclusionsCongenital aniridia leads to progressive visual impairment with significant emotional and social consequences. Narrative medicine offers valuable insight into patients' and caregivers' lived experiences, highlighting unmet needs and concerns often overlooked in conventional clinical practice.
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