Narrative study reveals struggles of families navigating rare eye disease
Caregivers of children with neurotrophic keratopathy face significant challenges due to delayed diagnosis, limited clinician awareness, and the demands of managing a rare disease, according to a study that highlights the need for improved provider education, support systems, and communication to enhance care and outcomes.
The research, based on interviews with 10 caregivers of children who underwent corneal neurotization surgery, explores the complex path to diagnosis and treatment of neurotrophic keratopathy.
Researchers identified 5 key themes:
- Frequent diagnostic delays due to limited clinician awareness,
- The proactive role of caregivers in seeking information,
- Major lifestyle adjustments,
- Improvements in corneal health and quality of life following corneal neurotization surgery, and
- Inconsistent experiences with healthcare systems.
Many caregivers voiced frustration over delayed diagnoses and emphasized the importance of support networks and clear communication with providers.
The findings highlight the urgent need for better clinician education on neurotrophic keratopathy and the value of narrative medicine in strengthening caregiver-provider relationships.
Reference
Tannir S, Mulenga C, Tran K, et al. A Narrative Medicine Approach to Navigating Barriers to the Diagnosis of Pediatric Neurotrophic Keratopathy. Am J Ophthalmol. 2025;S0002-9394(25)00162-X. doi: 10.1016/j.ajo.2025.03.043. Epub ahead of print. PMID: 40174715.
