The annual Retinoblastoma Research Symposium once again proved to be a resounding success! Held on January 25 and 26, 2020, the symposium gathered patients, survivors, family members, researchers, and clinicians to learn from each other, connect with their peers, and discuss the future of retinoblastoma research and advocacy.
Family Gathering
The first event of the weekend was the Family Gathering which featured informative presentations from clinicians, researchers and patients. The first panel covered research and treatment updates, including information about new retinoblastoma research studies, a new treatment option and the work being conducted on updating the Canadian Retinoblastoma Guidelines. The next panel featured patient stories and allowed for engaging discussion between patients on their varied experiences and journeys. Following this, members of CRRAB spoke about patient involvement in research, highlighting the work completed and goals accomplished by the CRRAB working groups in 2019. The last panel of the morning was ‘Ask the Experts’ where healthcare professionals, representing physicians, nurses, ocularists, genetic counsellors social workers and an expert parent, were available to answer questions from attendees. Overall the panels of the Family Gathering succeeded in generating engaging discussion and sharing new information on retinoblastoma.
Following the general gathering, a Marketplace showcased the various services available to the retinoblastoma patient community. Concurrent to this was a new addition to the symposium agenda for 2020, the Adolescent and Young Adult Q&A and Networking session. This session, designed specifically for patients and survivors, allowed for confidential discussion of experiences related to popular topics including accommodations in post-secondary education and work force, family planning, and second cancer screening.
Canadian Retinoblastoma Research Advisory Board Meeting
The afternoon consisted of the 4th Annual Canadian Retinoblastoma Research Advisory Board (CRRAB) Meeting . The meeting reviewed our 2019 accomplishments and discussed new ideas to move CRRAB forward in 2020. With the goal to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes, a simplified governance structure was proposed. This new structure establishes:
- project specific research patient partnerships when requested by researchers in order to help address a research priority
- CRRAB tools to share information about research results and opportunities with the community
- regional working groups to engage with the broader retinoblastoma community in order to recruit patients for registry as well as health professionals, researchers and patients for CRRAB
- Central/East Coast Working Group will meet on the 2nd Wednesday of each month at 12:00 PM EDT
- West Coast Working Group will meet on the 2nd Saturday of each month at 12:00 PM EDT
Through this structure CRRAB aims to meet new objectives in 2020. If you are interested in participating in one of the regional working groups, please contact: retinoblastoma.research@sickkids.ca for the ZOOM link information.
Research Workshops
Following the Family Gathering and CRRAB meeting, Sunday’s symposium activities began with gentle morning yoga. Attendees were invited to be present and create space in mind and body ahead of the day’s research workshops.
Priority #1 Research Workshop – Early Diagnosis
Author: Dr. Helen Dimaras
The 2020 Retinoblastoma Research Symposium saw a new Research Development working group come together, made up of patients, researchers and clinicians from Canada, Australia and the US. The group’s focus is on solving the #1 Retinoblastoma Research Priority in Canada: “How to increase early diagnosis of retinoblastoma (i.e., decrease age or stage at diagnosis)?” The main objectives for the group over the course of one year will be to: decide on a research approach; identify additional team members for relevant expertise or specific tasks; identify relevant funding opportunities; design a research protocol; and complete a funding application.
At the inaugural meeting, Working Group members participated in a brainstorming activity to break down the steps necessary for timely detection and diagnosis of retinoblastoma. They discussed various barriers that could impede timely detection and diagnosis at the public, family and medical level. The group decided to focus on 3 distinct research areas:
1) Soliciting patient experiences to define real barriers and facilitators to early diagnosis;
2) Examining technological approaches to leukocoria detection; and
3) Improving medical competency in performing red reflex examinations.
The Working Group will meet regularly online to refine the research approaches culminating in a final meeting at the 2020 One Retinoblastoma World Conference, where a research proposal and funding application will be finalized.
Priority #9 Research Workshop – Creating a Prototype of the Retinoblastoma Journey Map
Author: Ivana Ristevski
Retinoblastoma treatment is complex, and the treatment and follow-up plans for each patient may be different. Currently, there is no uniformity in how patient families receive information about their care; most families receive information through discussion with their healthcare providers, and some written, piecemeal information. One of the Top 10 Research Priorities raises this concern, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”.
The Priority 9 Workshop was led by Parent in Research, Ivana Ristevski, and Child Life expert, Morgan Livingstone and included parents, survivors, clinicians, health professionals, and children. The main goal of the workshop was to develop a patient-centred pathway of care based on the ‘Get Well Maps’ concept, a form of child-centered medical communication.
Using the ‘Get Well Maps’, we talked about how families would use the map and which stickers we would need to create to accurately reflect the retinoblastoma journey. From this discussion we agreed upon the concept of the stickers and provided feedback to the illustrator to produce 10 prototypes. These prototypes capture special events in the retinoblastoma journey.
Ivana worked with the illustrator after the meeting to design the prototypes for the clinical stickers based on the feedback from the workshop. The illustrator then created designs which we would like to ask all CRRAB participants to provide some feedback on.
Please click on the link below to be directed to a questionnaire where you will be asked to provide your feedback on several aspects of the RB Journey maps including sticker design, sticker description, and usability. The questionnaire should take about 30 minutes to complete.
https://forms.gle/Hsak95Ha9kVDDEN6A
Once we have your feedback, we will improve the RB Journey Maps prototype before it is handed out to newly diagnosed families. The families will use the maps for six months and provide continuous feedback on their experience. The feedback provided will help us refine the package and create a proposal for scale-up and sustainability of the project at SickKids.
Foundations of Patient-Oriented Research
Author: Francine Buchanan
There is nothing more invigorating than walking into a room of patients, families and researchers all keen to learn about how to partner together to make research better. The group together was keen to learn about the history of patient engagement, why it should be done, and the values associated with doing it in an authentic manner. But what filled me with such pride and joy was seeing the group working together to develop a list of their own best practices, ways that they want to and can partner together to make research better. Using their own experiences, from both partnership work already done and experiences from their own personal work, the group was able to build a list of practical tools, techniques and practices that they are able to bring to future engagement work. Thank you all for attending the session and sharing your knowledge with others.
Child Life Directed Children’s Program
Author: Morgan Livingstone
The Child Life Directed Children’s Program during the Symposium this year included a wide range of specialized activities and learning experiences meant to foster creativity, self-expression, fun, and bonding. With a wide range of activities offered over the two-day program, kids of all ages were busy!
The medical play station had our favourite patient puppets, including puppet Kamau, Elli the Elephant and Dino the Dinosaur for us to examine and evaluate with our stethoscopes, otoscopes and medical equipment. This year we included a lab station with pipettes and vials to test samples under magnifying glasses and microscopes. Numerous prosthetic eyes were available for children to explore and handle using fingers or suction cups to foster greater comfort and skill in handling their own prosthetic eyes in their own self-care.
The most amazing addition to the medical play station this year was the co-created MRI machine that children and child life staff built out of “loose parts” using recycled boxes, pipe cleaners and a crawl tunnel. The creation of this MRI facilitated discussion about MRIs, what they are for, the noises they make, and strategies for staying still during an actual procedure. Children were able to practice laying still in our “MRI” while listening to simulated MRI sounds on the helpful app, Simply Sayin’.
Children were also able to read and enjoy the newest Child Life Prep book for children with Retinoblastoma and their families “My Prosthetic Eye: Visiting the Ocularist”, made by Certified Child Life Specialist Morgan Livingstone and Ocularist Child Life volunteer Rebecca Gallant. We welcomed guest Matthew Milne, the local ocularist, for some fun creative arts activities. Matt helped each child make a special finger cast sculpture of their own fingers using the same plaster and alginate impression material he uses to make children’s prosthetic eyes! This allows the children to gain familiarity and confidence with the material, ask Matt questions about what he does when making a special eye, and build a friendship with Matt.
Another guest, Alexander Theodorou, from Neurofit, brought an awesome virtual reality game for each of the children to explore. This game was for all children, including those with monocular vision, and low vision. The games allowed the children to find and identify shapes and alphabet letters in mazes with settings, from easy to difficult, depending on age and stage of development.
At our art station, the creative kids made so many individual and group art activities over the course of the program. From self-published books all about themselves, to group murals for the symposium, to personalized buttons, kids tried new materials and art mediums to express themselves in many creative ways. One of our BIGGEST projects, was a group board game! This huge board game included co-creating space, giving space to include positives and negatives about the children’s lives, family, friends, and treatment experiences. A positive space, such as, “I cleaned my room without being asked” resulted advancing a few spaces. A negative like “I talked back to my mom when I was angry” resulted in a missed turn or going back a few spaces. The group discussed and added tasks or actions for players to do if they land on certain spaces like sing a song or tell a joke. The game allowed children to think and talk about the negatives and positives they feel are important.
Each child was able to make their own snow globe jars, marble painting, stress balls and slime! Our hands and our hearts were busy the whole time! Friendships were deepened and so much laughter shared too!
Huge thank you to our child life staff and volunteers: Alexx Friesen, Kim Zinc, Jocelyn Leworthy, Michelle Badajoy, Beth Nelson-Agne and Faiza Ali. This incredible program would not be possible without them!
Overall the 2020 Retinoblastoma Research Symposium was well attended with numbers similar to that of the previous year. However, we were lucky to see many new faces in attendance. One of these new families were the Worobecs. In describing her experience at the symposium Tricha, a parent of five-year-old retinoblastoma survivor writes, “It was not just resources that we attained at the symposium, we left with being empowered, connected, and most importantly hope in knowing that the essential research being conducted is coming from our voices from within the RB community. We left knowing that each one of us can make a difference through research engagement”. You can read more about the Worobecs’ experience in Tricha’s blog post.
Thank you to all who attended the symposium and shared your experience with the community. Thanks also to presenters, Child Life staff and volunteers who supported the event and allowed the 2020 Retinoblastoma Research Symposium to be a success.