Diagnosis and Treatment of Vernal Keratoconjunctivitis: A Qualitative Study of Caregiver, Patient, and Clinician Experience in the United States

Abstract

Purpose: To better understand the patient journey and challenges in the diagnosis and treatment of patients with vernal keratoconjunctivitis (VKC). Methods: This qualitative study assessed the experience of caregivers of children with VKC (n = 7) and of clinicians who treat VKC (n = 16) in the United States. The structured interviews were conducted to identify key “pain points”, obstacles, and trends on the path to diagnosis. Results: Like an earlier study conducted in the United Kingdom, this study found low awareness of the nature and severity of VKC among U.S. caregivers and non-specialist providers, and a tendency among young patients and their caregivers to downplay initial symptoms. Medical intervention was delayed as caregivers treated symptoms with over-the-counter medications; 88% (14 of 16) of specialists reported frequent misdiagnosis and mistreatment by pediatricians and primary care providers who were initial points of care. Time to appropriate referral ranged from 1 to 2 weeks to 3 months, in part due to convoluted referral pathways that were universal points of frustration for caregivers and specialists. Conclusions: Limited awareness of VKC remains a barrier to timely identification and management of this rare but disruptive ocular surface disease. Caregivers underestimate symptom severity, pediatricians and primary care providers often misdiagnose VKC as allergy or infection, and referrals to appropriate specialists are delayed until symptoms are severe. Early identification is essential to improving the diagnostic journey and treatment of VKC. [ J Pediatr Ophthalmol Strabismus . 2024;61(4):252–256.]