Authors: Mawj Al-Hammadi & Ivana Ristevski
Priority #3: Psychosocial Support
Retinoblastoma Research Priority #3 asks, “How to provide culturally competent social, emotional, and psychological support to retinoblastoma patients, survivors, parents, and families (at diagnosis and beyond)?”. In August of last year, a study was launched that aims to address this priority. This study asks survivors and parents of survivors who received care in Canada to complete a survey on their psychosocial needs during and after retinoblastoma treatment. A wide range of recruitment methods have been used to reach participants, including social media outreach, in-person recruitment, and promotion by partner organizations. Currently 51 participants have completed the survey out of the study target of 400. Of the 51 participants there were 34 parents/caregivers, 15 survivors, and 2 participants who fall into both categories. The study has only reached 12% of its total recruitment goal; please consider completing the survey today!
Priority #9: Pathway of Care
Retinoblastoma Research Priority #9 asks, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”. Since our first research workshop during the 2020 Retinoblastoma Research Symposium, the work on the project “Retinoblastoma Journey Map” to address this priority has been ongoing. The Journey Map uses an illustrated board and repositionable retinoblastoma-specific stickers to help families visualize progress towards a goal. The tool was tested with a small number of families affected by retinoblastoma to evaluate its usability and impact on patient communication and patient-physician interactions. The project data has been analyzed and a manuscript is in the works. During the 2023 Retinoblastoma Research Symposium a workshop was held to co-develop a plain language summary based on the paper’s scientific abstract. The authors are currently reviewing the manuscript and will submit it to a scientific journal this summer.