Factors influencing delayed medical treatment in children with retinoblastoma: a qualitative study

Retinoblastoma (RB) is the most common primary intraocular malignancy in children. Its 5-year survival rate exceeds 90% if diagnosed early. However, delayed care-seeking allows the disease to advance to late stages and can become life-threatening. This study employed qualitative methods to characterise the experiences underlying delayed presentation among children with RB. Between March 2021 and December 2022, caregivers of children with RB in the ophthalmology inpatient department of a tertiary hospital in Shanghai were recruited using the purposive sampling method to participate in a semi-structured interview. The data were processed and analysed using the Colaizzi method, and themes were identified. Four themes emerged from the interviews: delayed caregiver assessment, delayed pediatric medical-seeking, delayed diagnosis of childhood disease, and delayed treatment of childhood disease. This study identifies four critical stages contributing to delayed RB diagnosis and proposes targeted interventions for healthcare providers: strengthening public education to enhance RB awareness, establishing an efficient healthcare support system with rapid referral pathways, expanding eye disease screening programmes and optimising resource allocation for early detection and treatment, and implementing family-centred care models alongside promoting shared clinical decision-making. A multi-pronged approach incorporating these measures could effectively reduce diagnostic and treatment delays.