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“Cup of Tea” Journal Club March 2024

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, March 19, 2024 8:00 – 9:00 PM ET. Our speakers will be Ella Bowles, retinoblastoma patient and Dan Gombos, Section Chief of Ophthalmology at MD Anderson Cancer Center in Houston, Texas. Together they will be discussing the article, “Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma” for which they will create a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals, and researchers to participate in this free virtual event. If you cannot access the original article, please contact us at retinoblastoma.research@sickkids.ca.

In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, March 19, 2024, 8:00 PM ET

Duration: 60 minutes

Topic: Long-term follow-up for heritable retinoblastoma

Meeting Link: https://zoom.us/j/94388654905?pwd=T3Y5c1lYZjNnb1ZOWUI1ZXhKMlZBQT09

If you missed our last “Cup of Tea” event on, “Eye-related quality of life and activities of daily living in pediatric retinoblastoma patients: a single-center, non-controller, cross-sectional analysis” led by Genevieve McCarthy and Margaret Reynolds, you can watch the recording or listen to the podcast version now.

Examining the Influence of Social Determinants of Health on…

Author: Omer Jamal

Person standing in front of a poster — Omer Jamal at 2023 SIOP Conference

In the fall of 2022, I began pursuing a master’s degree in Dr. Helen Dimaras’ lab at the Hospital for Sick Children Department of Ophthalmology. My research experiences lie in pediatric ophthalmology, and social determinants of health (SDH) which are non-medical factors that affect health outcomes (ex. income and social status, employment and working conditions, housing and transportation). 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 (SDH) 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.

Through this 5-year study that looked back on past health data, we 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 addressing unfavorable SDH by implementing a more holistic approach to healthcare that includes screening and identification of SDH, advocacy and policy change, tailored healthcare interventions, and cultural competence and sensitivity, could serve to 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 would be to engage patient partners and community members in knowledge translation. 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.

“Cup of Tea” Journal Club December 2023

The next “Cup of Tea” journal club will take place on Tuesday, December 19, 8:00 – 9:00 PM ET. Our speakers will be Genevieve McCarthy, retinoblastoma survivor and President of the Canadian Retinoblastoma Society and Margaret Reynolds, pediatric ophthalmologist at St. Louis Children’s Hospital. Together they will be discussing the article, “Eye-related quality of life and activities of daily living in pediatric retinoblastoma patients: a single-center, non-controller, cross-sectional analysis” for which they will write a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals, and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, December 19, 2023, 8:00 PM ET

Duration: 60 minutes

Topic: Eye-related quality of life in retinoblastoma patients

Meeting Link: https://zoom.us/j/93869626816?pwd=YVA2MHIzNmJwRE5HRW00b1BGM3Vydz09

If you missed our last “Cup of Tea” event on, “Group Medical Play and Children’s Self-Reported Fear in the Pre-Operative Setting” led by Lindsey Berlett, Morgan Livingstone, and Jocelyn Leworthy, you can watch the recording or listen to the podcast version now.

Patient Experience: Acting as a Cup of Tea Co-Host

Authored by Jillian Purdy

My name is Jillian and as parent of a 3 year old son with retinoblastoma, I am here to share my experience as a ‘Cup of Tea’ co-host.

My retinoblastoma journey began on December 24, 2019, when my son Samson was diagnosed at 6 months old. We hadn’t heard of retinoblastoma before and I’m sure many of you can relate to the shock and horror of hearing the word ‘tumour’ and ‘cancer’. After the initial period of feeling scared and alone, we started to realize that there was an incredible team at SickKids who would be there with us every step of the way. From ophthalmologists to oncologists and social workers to geneticists, it was overwhelming but also reassuring to know that so many people were dedicated to our son’s care. Although we are back in active treatment after months of remission, we remain hopeful that Samson will one day call himself a survivor.

Samson was also diagnosed with 13q Deletion Syndrome, which means he is missing a piece of the 13^th chromosome, including the RB1 gene that causes retinoblastoma. Because we we’re so engrossed in battling RB, we thought of this news as an answer to why he has cancer rather than a whole new set of life changing challenges. As Samson got older and we moved out of active treatment, we started to fully realize the impact. The reality of this diagnosis for Samson is severe global developmental delay. And because of its rarity and the spectrum of severity, we are left to discover its characteristics as Samson grows. We have a team of paraprofessionals providing early intervention to help Samson reach his full potential. I am happy and proud to say that today he uses about 15 words and is learning more every day. This may not sound like much, but after wondering if he would always be non-verbal, it feels like a miracle.

I can’t remember exactly when I learned about CRRAB, but I do remember being impressed by how organized, active, and wide-ranging this community is. During the first few months after diagnosis, I just wanted knowledge and CRRAB was a great resource. As we moved out of the initial treatment phase, I wanted to be a more proactive participant in the community. I was inspired by the idea that simply sharing my lived experience could help future families navigate a RB diagnosis, help move research forward, and even influence the direction of research itself. I have attended quarterly meetings, read the newsletters, participated in the annual symposium, and joined a working group however, the most rewarding experience so far has been co-hosting a ‘Cup of Tea’ event and writing a research article summary with a clinician. I was asked to participate by a member of CRRAB and am grateful for this because I’m not sure I would have taken the initiative on my own. I was able to choose a topic and article that I was passionate about and was partnered with one of Samson’s health professionals. Not only were we able to discuss the article as it related to my son specifically, which helped with establishing a deeper understanding, I was also able to build that relationship and connection to my son’s care team. My hope is to continue to be an advocate for 13q deletion as it relates to RB and co-hosting the Cup of Tea event helped me to raise awareness of this topic. There was engagement with the community through questions that were raised about the research and discussion of potential next steps.

Throughout my limited experience with CRRAB I have learned that patients, parents, survivors, health professionals, researchers and more all have an important place in the CRRAB community.

All of these voices together are what moves RB research forward. “You can do what I cannot do. I can do what you cannot do. Together we can do great things.” – Mother Teresa. I encourage patient partners to continue to use their unique skills, strengths, and experiences to participate in CRRAB events like the ‘Cup of Tea’ and make a difference for past, present, and future retinoblastoma patients and their families.

“Cup of Tea” Journal Club September 2023

The next “Cup of Tea” journal club will take place on Tuesday, September 19, 8:00 – 9:00 PM ET. Our speakers will be Lindsey Berlett, Patient Partner, Morgan Livingstone, Child Life Specialist, and Jocelyn Leworthy, Child Life Specialist. Together they will be discussing the article, “Group Medical Play and Children’s Self-Reported Fear in the Pre-Operative Setting” for which they will write a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals, and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, September 19, 2023, 8:00 PM ET

Duration: 60 minutes

Topic: Group medical play and its impact on children’s self-reported fear in a pre-operative setting

Meeting Link: https://zoom.us/j/99331924417?pwd=Ukp0dFp5bWduLy9CeVZRTXkyU3g3QT09

If you missed our last “Cup of Tea” event on, “Considerations for the use of circulating tumor DNA sequencing as a screening tool in cancer predisposition syndromes” led by Mary Connolly-Wilson, Stephanie Kletke, and Julia Sobotka, you can watch the recording or listen to the podcast version now.

Importance of Patient Engagement in Retinoblastoma Research

Author: Ivana Ristevski

I have been part of the Retinoblastoma Research team for 5 years now and in that time, I have had the opportunity to help with several projects and be a co-lead for the Canadian Retinoblastoma Research Advisory Board (CRRAB) where I helped co-host several meetings, workshops, and events. During this time, I learned that while all our journeys are different, we all want to help make the journey for the next generation easier and it is a bonus that we get to do it while working together! When I say working “together” I am thinking of the parents who attend meetings to connect with other families and learn from the health professionals, the survivors who are curious to find other survivors and exchange experiences, and the health professionals who attentively listen to stories of those with lived experience and incorporate change in their practice.

While each project I have worked on has been different, the one consistency has been personal growth. For myself, each experience has taught me a new skill including preparing for and leading workshops, setting up a website, event planning, and product design. But I am not the only one learning. Several projects have offered participants an opportunity to stretch their creative muscles. For example, a young CRRAB member stood in front of a workshop group and helped design stickers for the Retinoblastoma Journey Map whereas another member learned to use PowerPoint to create slides for a Cup of Tea presentation.

While I appreciate the newly developed skills I have learned, my greatest appreciation has always been the ability to learn about retinoblastoma from people with lived and professional experience in a comfortable setting where I could ask questions and discuss topics that I wanted to better understand. While I have personally benefitted, this has also resulted in my son learning more about retinoblastoma to the point where he can now advocate for himself in the future.

In turn, I also enjoy sharing my experience with my research team not only to help add the human element to research but also to add a human element to retinoblastoma. By offering my story to research students and colleagues, I hope that they start to see that a patient is not just a child with retinoblastoma but as someone who may have just had a long journey to get to their appointment, who may be feeling side effects of treatment, a family member that has gone through this journey together with their child, sibling, cousin, etc., and therefore, all have been affected in some way. Each patient has a unique journey and when the various experiences are incorporated, the quality of research will be more holistic.

Patient engagement in research has made significant impacts on retinoblastoma research. A few highlights include:

By sharing their lived experience, a patient partner garnered support to include the need for more research on vision loss in the Top 10 Retinoblastoma Research Priorities.
A survivor, using their professional experience, recommended using a QR code in the Retinoblastoma Research and You! booklet for easier access to online information.
A young survivor shared that the first time they met other children with retinoblastoma was a major event that contributed to their overall wellbeing during a workshop which resulted in a sticker for the Retinoblastoma Journey Map to celebrate “finding community”.
Working group members selected one of the Top 10 Retinoblastoma Research Priorities to create a study to address it. Individuals looked for funding opportunities, created demographic surveys, and reviewed questionnaires to create the study. Members of the group with lived experience made sure the questionnaires incorporated all aspects of the retinoblastoma journey.
Patient partners also help support CRRAB by volunteering for the social media team, creating and maintaining the website, and writing blog posts.

There are many more examples of the amazing work that patient partners bring to a research project. However, as part of the research team, I have also seen the challenges that come with patient engagement such as: (i) funding priorities often do not support things like travel and compensation; (ii) working across many time zones in Canada makes it difficult to find a good time for meetings for all participants; (iii) general burnout from many responsibilities of our participants results in low turnout at some meetings and events.

As a result, your voice is needed! Without a wide variety of views and experiences research may not be able to reach all members of the retinoblastoma community and create solutions to care for all.

If you are interested in participating but are not sure how or just want to know more, send me an email and I would love to talk to you about your experience and interests so I can help you find the right fit with CRRAB and retinoblastoma research.

You can also learn more from our Retinoblastoma Research and You! booklet and by attending one of our upcoming events. In order to stay up to date on all opportunities and events, make sure to join the Retinoblastoma Research Community.

2023 Retinoblastoma Research Symposium Recordings

Recordings of the sessions from the 2023 Retinoblastoma Research Symposium are now available on the CRRAB YouTube channel! If you missed a session or want to review parts of the event, check out the playlist now.

The playlist can be found here

Retinoblastoma Research Priorities Updates

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.

Retinoblastoma Care through Child Life

Author: Morgan Livingstone

In the simplest language, it is my job as a certified child life specialist to help kids cope with whatever life throws at them. I always knew I wanted to be a child life specialist and give children a voice where I felt they were powerless. I love being a child life specialist and figuring out the simple and complex ways I can help provide play-based support, preparation, education, and information in creative ways to help kids be and feel successful in their healthcare experience.

In my role as a CCLS, I have learned about children’s incredible ability to survive and thrive while facing illness, trauma, loss and/or end-of-life. The resilience of children of all ages never ceases to amaze me, and I consider myself privileged to have the chance to work and play with them and their families.

I have been actively participating with CRRAB since it began, and I am forever committed to helping CRRAB support children and families facing Retinoblastoma (RB) through the implementation of child life supports, programming and research.

RB is an illness impacting the very young – babies and children at the start of their lives experiencing painful procedures and frequent examinations under anesthesia. RB treatments have the potential to impact a child’s ability to cope and have a healthy development over their lifetime. Child life interventions are essential to mitigating and preventing maladaptive coping and unhealthy development and should be provided upon diagnosis, throughout treatment and follow up care. Despite this knowledge, most child life supports provided to children with RB are being delivered well after diagnosis, after treatment is completed, or in many cases child life is not provided at all.

My hope for the future of child life in healthcare systems and RB care is for child life to be provided as a part of expert clinical care from the start, like chemotherapy, upon diagnosis and throughout treatment and follow up. We provide lifesaving care to rid the body of cancer, and keep that child alive, but do not provide child life interventions to ensure the child themself, the individual inside that body, survives as a whole person at diagnosis, during treatment and beyond. My hope is that child life be provided to prevent problems in children’s coping and therefore, support a healthy development instead of being provided after a problem has arisen.

CRAAB’s endeavors in child life research, and research in general, can help evaluate and validate child life interventions. Increasing research related to child life can strengthen the profession and provide greater data to help advocate for improved child life interventions for all patients.

CRRAB has been committed to improving access to child life services for children and families facing RB from its inception. Through investment in the years of enriched child life programming at the Retinoblastoma Research Symposia, conducting research, and implementing educational opportunities that spread the word about the importance of RB specific child life, CRRAB is changing the face of RB care for the future.

For more information about the child life profession, here is a link to our governing association: https://www.childlife.org/the-child-life-profession

“Cup of Tea” Journal Club June 2023

The next “Cup of Tea” journal club will take place on Tuesday, June 20, 8:00 – 9:00 PM ET. Our speakers will be Mary Connolly-Wilson, family member to retinoblastoma survivors, and Stephanie Kletke, pediatric ophthalmologist. Together they will be discussing the article, “Considerations for the use of circulating tumor DNA sequencing as a screening tool in cancer predisposition syndromes” for which they will write a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals, and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, June 20, 2023, 8:00 PM ET

Duration: 60 minutes

Topic: Use of circulating tumor DNA sequencing as a screening tool

Meeting Link: https://zoom.us/j/96748732382?pwd=MkU1TVZIMlB2K2ZOZkdzdXFIVWx4QT09

If you missed our last “Cup of Tea” event on, “An exploratory study of sleep habits in school-aged survivors of retinoblastoma” led by Leslie Low and Kimberly Courtney you can watch the recording or listen to the podcast version now.