Abstract
<b><i>Introduction:</i></b> Retinoblastoma treatment and follow-up is complex and varies between patients. Pathways of care can enhance the quality of care, patient outcomes, safety, satisfaction, and resource optimization. Developing a pathway of care for retinoblastoma was identified as a top research priority by the retinoblastoma community. This study aimed to co-design and pilot a pathway of care called the “Retinoblastoma Journey Map” tailored for caregivers of newly diagnosed children with retinoblastoma. <b><i>Methods:</i></b> A working group of patients, health professionals and researchers used human-centered design to ideate, prototype and refine the Retinoblastoma Journey Map. Caregivers of affected children were recruited to use and evaluate the Map. Mixed-methods data was collected on feasibility, acceptability, usability and perceived impact on communication, self-efficacy, anxiety, depression, and the quality of physician-patient interaction. <b><i>Results:</i></b> The Retinoblastoma Journey Map consisted of an illustrated roadmap with 25 child-friendly stickers covering clinical treatment, medical education and milestones. Quantitative analysis revealed that the Map was feasible, acceptable, and useable; however, no significant effect on communication, self-efficacy, anxiety, depression or quality of physician-patient interaction was observed. Qualitative analysis identified 6 themes: Primary Use; Challenges; Impact; Limitations; Feasibility, Acceptability, and Usability; and Unmet Needs. <b><i>Conclusion:</i></b> A pathway of care for retinoblastoma, co-designed by researchers, health professionals, and patients, was useable, acceptable, and feasible by caregivers of children with retinoblastoma. While significant effects on communication and physician-patient interaction were not observed, “legacy building” – documentation of the pathway of care by families for later education of their child – emerged as an unanticipated yet important use of the Retinoblastoma Journey Map.