Examining the influence of social determinants of health on rare pediatric eye cancer

Omer Jamal is a master’s student in the Institute of Medical Sciences at the University of Toronto and Leong Centre Scholar. He recently presented at the Association for Research in Vision and Ophthalmology Annual Meeting in Seattle, Washington, and provides a summary of his poster presentation.

In the realm of pediatric oncology, rare eye cancers such as retinoblastoma pose significant challenges not only due to their medical complexity, but also because of the multitude of ways in which social determinants of health can influence outcomes. Despite this, there is limited evidence on the specific impact of social determinants of health (SDH) on rare pediatric eye cancer (R-PEC) outcomes in Canada. Thus, in our project we examine (i) the availability of SDH data in the electronic health record, and (ii) the association of R-PEC patient SDH with (a) medical visit attendance, (b) age and stage at diagnosis, (c) clinical outcomes, (d) emergency visits, and (e) care plan delay.

We have found that children from, lower socioeconomic backgrounds, non-white race, low material resourced communities, and rural communities, were associated with poor medical visit attendance, delayed diagnosis, greater visual impairment, higher emergency room visits, and increased delays in care. Medical professionals and healthcare systems are addressing unfavorable SDH by implementing a more holistic approach to healthcare delivery that includes screening and identification of SDH, advocacy and policy change, tailored healthcare interventions, and cultural competence and sensitivity. We feel strongly that this could improve the quality of life for children with retinoblastoma. The work on understanding the association of social determinants on pediatric eye cancer contributes significantly to the retinoblastoma community by promoting early detection, informing policy, and emphasizing the importance of support services. The insights gained from this research can inform policymakers about the critical need for equitable healthcare policies to ensure that all children, regardless of their socioeconomic background, receive timely and effective care for retinoblastoma. The research also contributes to the medical community’s understanding of how social factors might influence treatment adherence and effectiveness. This knowledge can lead to more personalized treatment approaches that consider the patient’s social context, thereby optimizing treatment plans and improving outcomes. In addition, this research can act as a catalyst for essential collaborations between healthcare providers, researchers, advocacy groups, and policymakers. Such collaborations are essential for addressing the complex challenges faced by the retinoblastoma community and for implementing the changes needed to improve care and support.

Overall, our retrospective analysis serves as a call to action for the medical community and society to recognize the impact of social variables in the context of retinoblastoma. Next steps for this project are to engage patient partners and community members in knowledge translation via the consultation service of the Edwin S.H. Leong Centre for Healthy Children provided by Priscilla Medeiros the Community Engagement Specialist. Engaging patient partners and community members in this process ensures that the information is relevant and accessible. We will use strategies like workshops, written materials, and digital media to acquire feedback and evaluation helping to refine our studies efforts/ next steps and ultimately fostering sustained engagement and impact. Following this, we would want to assess perspectives of healthcare providers on, and readiness for, collecting SDH data and integrating insights into care; and uncover patients views on discussing SDH during care, and how they perceive SDH affect their care and outcomes.

Question: What do you hope to gain from this experience?

Answer: From this experience, I hope to gain a deeper understanding of the social determinants of health in the context of R-PECs and how they impact patient care and outcomes. Engaging with patient partners and community members will provide valuable insights and feedback to refine our knowledge translation strategies, ensuring that our findings are relevant and accessible. Additionally, I aim to learn about healthcare providers' perspectives on integrating social determinants of health data into care and to understand patients' views on discussing these factors during their treatment.