CBS is a complication of sight loss affecting all ages; yet, few childhood cases have been reported. The study aims to explore the under-reported association occurring in children and young adults.

Search of electronic patient records identified 13 patients experiencing hallucinatory events over a 9-year period. Outcomes were patient demographics including ocular diagnosis, visual acuity at time of onset, characteristics of hallucinations, clinical management strategies and patient-reported affliction.

Eight patients were diagnosed with progressive inherited retinal diseases, primarily Stargardt disease (N=5). Clinical history indicated patients had significantly reduced best-corrected visual acuity (BCVA) in at least one eye at onset; median (IQR) worse eye BCVA was 1.0 (0.86–1.6) logarithm of minimum angle of resolution(LogMAR). CBS significantly affected patients’ personal lives including education, diet and sleep. Clinical management was varied, mostly relating to reassurance at the point of contact.

The study provided the clinical features of young patients with CBS, with management strategies and aspects of negative outcomes. High potential caseload and risk of psychological harm merit further research. Increased awareness among healthcare professionals and patient education to forewarn susceptible individuals may reduce the overall impact and improve coping with symptoms.