Digital retinoblastoma documentation supports care and research.

Abstract

Introduction: In 1948, the indirect ophthalmoscope revealed full intra-ocular retinoblastoma, documented on paper with coloured pencils. At SickKids, eCancerCare^RB (eCC^RB) digital drawings and timeline have facilitated patient care, education, and research.

Methods: Each child's eCC^RB timeline shows treatments and dates. The Swimmer^RB tool presents eCC^RB data for research with time "0" start of intervention. Any tumour treatment after the intervention indicates recurrence; no cancer treatments indicate complete response. To further quantify the impact of retinoblastoma on child/family, we arbitrarily assigned a "consequence" score to each standard treatment (i.e., focal = 1, intra-arterial chemotherapy = 3, enucleation last eye = 30). Retrospective control eCC^RB patients were matched to study participants by similar "propensity" scores before time "0." Postintervention scores indicated effectiveness.

Results: eCC^RB included 700 patients with retinoblastoma treated between 2001 and 2023 at SickKids. Swimmer^RB facilitated comparing eCC^RB patients treated with single- versus triple-drug intra-arterial chemotherapy. In the phase 1 Chemoplaque Clinical Trial, Swimmer^RB analysis compared number of treatments before and after the Chemoplaque. Consequence scores quantitating negative outcomes will be refined by quality-of-life studies including those with lived experience. DEPICT HEALTH (DEPICT) on the cloud-hosted technology will soon replace eCC^RB (now-outdated technology), offering digital retinoblastoma care to the world.

Discussion: eCC^RB (only in SickKids) is the time-tested prototype for DEPICT on the cloud. DEPICT brings digital retinal drawings, timeline, research, and clinical consultation to full view for families as partners in retinoblastoma care. DEPICT will be offered through the International Retinoblastoma Consortium to any site caring for children with retinoblastoma.