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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
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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.
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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
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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 discussion on the topic covered.
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.
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.
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Author: Alena Vincent
Retinoblastoma has been in my family for 3 generations, passed from my mother to me and from me to my daughter, but with each new generation there has been a different journey for each of us. My mom, Kathy, was diagnosed in the 1950s. When my grandmother discovered my mom was having difficulty seeing as a toddler, she brought her to a specialist where she found out the cause, bilateral retinoblastoma. My grandparents had to make the difficult decision: risk radiation and scarring to my mother’s face with little chance of it successfully curing her cancer, or remove her eyes to save her life. They decided on the latter. My mom found out in her 20s that her form of retinoblastoma was likely hereditary, so she chose to get as much information as she could, and this is how she found Doctor Brenda Gallie in the 1980s.
Although my older brother was unaffected (DNA would later prove he was never a carrier), my first tumours were discovered at 4 months old. I was one of the first retinoblastoma patients in Canada to receive laser therapy under Doctor Gallie’s care, and this combined with cryotherapy saved my eyes and my vision. To this day, I still have 20/20 vision in both eyes.
When my husband and I chose to start our own family, we wanted to be as prepared as possible, so we opted for the chorionic villus sampling (CVS) prenatal DNA test. Our first child, Kyler, wasn’t a carrier, however, our second child, Violet, was considered “affected”. We were referred to a wonderful ophthalmologist in Edmonton, Doctor Solarte, who recommended I be induced at 36 weeks and told me that we would likely have to go to Toronto to have Doctor Gallie and Doctor Solomon treat Violet. On October 24th, 2017, Violet was born and at a day old her first tumour was discovered. She has had a total of 5 tumours, 4 in her right eye and 1 in her left eye, all successfully imaged and treated with an Optical Coherence Tomography (OCT) scanner and laser therapy respectively. One of Violet’s tumours was only 0.4 of a millimeter. It was one of the smallest retinoblastoma tumours to ever be successfully laser treated. She is now 3 years cancer free, has 20/25 vision in both eyes, and is an independent and adventurous 5-year-old.
I joined CRRAB in the fall of 2018. I was excited to be part of further improvements for care and to share my experiences as a survivor and as a parent of a child actively in treatment. I have participated in many activities since I joined including; attending zoom calls to share insights, speaking at and attending a RB Family Gathering in Calgary, virtually attending the RB Symposium in 2021 during the COVID-19 pandemic, and leading a discussion at a Cup of Tea meeting about an article examining OCT scanners.
We just passed World Retinoblastoma Week this past May 14 – 20. It’s fitting that the last day fell on what would have been my mom’s 71st birthday. Unfortunately, she passed away from cancer in 2012. She would have loved to see a world that catches retinoblastoma early and faces the RB1 gene with more knowledge and preventative care. Every pediatrician and general practitioner should be more aware of retinoblastoma. The lack of knowledge here has caused many children to go undiagnosed for critical weeks even when caregivers are fighting for answers. This shouldn’t be the case. In recent years, we’ve seen amazing advancements in genetic research, and doctors are starting to take genetic predispositions seriously. When RB1 survivors and their doctors understand their increased risk, it can help catch secondary cancers early, and allow survivors to live long healthy lives.
CRRAB is part of the movement forwards. It not only works to support children and families actively going through care, but also to educate for awareness and advocate for long term care for patients who have suffered vision loss, have prosthetic eyes, or are at risk for secondary cancers due to the RB1 gene. Their continued push to use public platforms and events to share information and create a community helps survivors and parents feel less alone, and it is this knowledge that will help future generations. Knowledge is power, and its power is why both my daughter, and I can see today. Knowledge communities like CRRAB will help support RB patients and survivors for the rest of our lives.
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The 2023 Retinoblastoma Research Symposium was once again a success! In our first hybrid symposium on January 28 – 29, 2023 we gathered the community both in-person and virtually to grow together and advance patient-oriented retinoblastoma (RB) research in Canada. The symposium gathered many stakeholder groups including RB patients, survivors, parents, other family members, researchers, and health professionals to connect with each other, learn about CRRAB, and discuss the future of RB research.
Terry Kelly
To kick off the first day of the symposium Terry Kelly gave a riveting keynote presentation. As an RB survivor, Terry spoke of his experience with RB and blindness, through the combination of storytelling and music. Terry shared the numerous challenges he faced from childhood through to his adult life and explained how he relied on his loved ones and learned to adapt in order to find solutions. For example, Terry and the rest of his classmates at the Halifax School for the Blind, had the opportunity to play hockey by altering their equipment to add buzzers to their nets or using a can can filled with marbles as a puck. In sharing his life experiences, Terry motivated us to look at our lives with a new perspective. Through his song Celebrate Life Terry sang about being not only a cancer survivor but also being a survivor that thrives throughout their life.
Dr. Francine Buchanan, MLIS, PhD
The second day of the symposium began with a keynote presentation by Francine Buchanan. Francine works at SickKids as the Research Patient & Family Engagement Coordinator, to ensure that patients and families have the opportunities to partner with researchers in pediatric research. She shared how her initial motivation behind her work started when her son, who faces several medical complications, was born. During her presentation, Francine discussed some of the common barriers to patient engagement in research and expounded on the various complexities of incorporating patient engagement into a project. However, despite these perceived difficulties, Francine highlighted the importance of patient engagement in research and how including the patient voice provides added depth through their valuable expert insight gained through their personal experiences.
The Seventh Annual CRRAB General Meeting provided a forum to review the goals and accomplishments of previous years, reflect on the lessons learned from the past, and to develop a plan for 2023. During the meeting, existing CRRAB members came together with the broader RB community to learn more about CRRAB and set goals for 2023.
The goals of CRRAB are designed to be aligned with the three main aims of the Canadian Patient Engagement Strategy. Each year, goals are set to help move the aims forward. In 2023, CRRAB decided to focus on one main goal per aim, as follows:
Strategy Aim 1: Include a large and diverse group in retinoblastoma research.
2023 Goal: Collate metrics about size and composition of the Retinoblastoma Research Community, and share, in a simple and user-friendly format, with CRRAB members in each quarter of 2023.
How does this goal help support Strategy Aim 1? By knowing details about who is already enrolled in the Retinoblastoma Research Community, we also learn who is missing. Knowing who is missing will inspire new strategies to assist in reaching the under-represented.
Strategy Aim 2: Share research results.
2023 Goal: Identify and train four pairs of patient- and non-patient partners to lead a “Cup of Tea” event producing a plain language summary, video recording and podcast, each covering a RB research article, in March, June, September and December of 2023.
How does this goal help support Strategy Aim 2? The “Cup of Tea” has proven successful in gathering a large group to discuss important RB research in a way that makes it accessible to non-researchers. By continuing this program, we share more research results, and as it grows, it will reach a larger audience.
Strategy Aim 3: Promote patient-partnered research.
2023 Goal: Raise awareness and facilitate participation of patients, researchers, and health professionals. CRRAB members in project-specific patient partnerships aimed at solving the Top 10 Retinoblastoma Research Priorities, by end of 2023.
How does this goal help support Strategy Aim 3? By raising awareness about and linking CRRAB members to research teams aiming to solve the Top 10 Retinoblastoma Research Priorities, the resultant research will incorporate lived experience and lead to higher quality results.
Priority 2
Speakers: Mary Connolly-Wilson, Dr. Stephanie Kletke, Dr. Trevor Pugh
Retinoblastoma Research Priority #2 asks, “What second cancer screening is optimal for heritable RB survivors?”. Approximately 45% of RB patients have the heritable form with those affected having a greater risk of second cancers later in life, as well as the risk of RB being passed on to their children.
The panel began with Trevor Pugh, cancer genomics researcher, who gave an overview of his project that uses circulating tumour DNA (ctDNA) from blood samples from patients with hereditary cancer syndromes to detect cancer. He ended his presentation with an example from a neurofibromatosis type 1 (NF1) patient for which their leukemia was detected earlier via the ctDNA monitoring compared to conventional surveillance by whole body MRI. The next speaker, Stephanie Kletke, pediatric ophthalmologist, explained the risk of second cancers for hereditary RB survivors and reiterated the need for non-invasive early second cancer detection. She then summarized her proposal for a clinical trial to determine the feasibility of cell-free DNA liquid biopsy to detect second cancers in heritable RB. To close out the panel, Mary Connolly-Wilson, genetic counsellor and family member to RB survivors, provided her personal and professional opinion on the topic. Mary shared her family’s experiences with second cancers and underlined the need for effective screening protocols for heritable RB survivors.
Priority 4
Speakers: Dr. Ella Bowles, Dr. Bruce Crooks, Dr. Ashwin Mallipatna, Marg Macfarlane
Retinoblastoma Research Priority #4 asks, “What is the optimal follow-up for heritable RB patients and survivors and how can we ensure this is provided to all?”. Heritable RB survivors have increased risks of recurrent RB in childhood and second cancers later in life, as well as the risk of passing the RB1 pathogenic variant to their children. These risks correspond to the need for standardized plans for adult follow-up of heritable RB survivors, which do not currently exist.
Bruce Crooks, pediatric oncologist, started the panel presentations by giving an overview of the concepts of long-term follow-up and survivorship. He underscored the idea that all aspects of a cancer survivor’s health and well-being from diagnosis to end-of-life should be included in survivorship and presented the trajectory of care from diagnosis to active treatment, to follow-up and surveillance, to long-term follow up. Next, Ashwin Mallipatna, pediatric ophthalmologist, presented follow-up in terms of care for the eye. He explained the various factors that play a part in deciding on eye follow-up including, age, laterality and genetics, treatment received, and other complications. The next presenter, Marg Mcfarlane, family member of RB survivors, provided her lived experience of RB, explaining the self-screening her affected family members were informed of and detailing the lack of protocol for follow-up in her family. Finally, Ella Bowles, RB survivor and scientist, presented by sharing her RB story and highlighted her struggles to access the appropriate follow-up care as an adult.
Priority 5
Speakers: Dr. Furqan Shaikh, Dr. Helen Dimaras, Dr. Brenda Gallie, Jillian Purdy
Retinoblastoma Research Priority #5 focuses on new treatments for RB, and in particular, prospective studies that have long-term follow-up. These prospective studies help us better develop new treatment methods for RB and allow us to determine their impact on patient outcomes.
The panel started with Furqan Shaikh, a pediatric oncologist, sharing the history, current standards, and future directions of RB treatments. Then, Helen Dimaras, scientist, and Brenda Gallie, ophthalmologist, shared updates of their current research studies. Helen presented the development of a new biobank at SickKids, with the purpose of providing other researchers the resources to conduct research on RB and other pediatric eye cancers. In addition, Helen discussed the status of a North American multi-site study, looking at the long-term health outcomes of RB patients. Brenda followed by sharing some exciting results of her clinical trial that tests the “chemoplaque” a device that is glued directly to the eye to deliver sustained-release chemotherapy directly to the affected eye. Finally, Jillian Purdy, a parent of a child with RB, shared her family’s experience of her son participating in Brenda’s chemoplaque clinical trial, and the importance of new treatments for RB from a parent’s perspective.
Ask the Experts
Speakers: Dr. Marie-Anne Brundler, Dr. Hallie Coltin, Beverley Griffiths, Terry Kelly, Matthew Milne, Alissa Ulster, Rose Venier
The ‘Ask the Experts’ panel consisted of a wide range of experts including a pathologist, oncologist, nurse, RB survivor, ocularist, social worker, and genetic counselor. The panelists answered questions from attendees on various topics such as, “What steps does pathology take from when the tumor is collected to when a patient receives the results?”, “What are the new technologies being used in making prosthetics?” and “How should family’s receive clinical information?”. All the experts on this panel play an important role in supporting the patient and family. If you have any questions about your care or about RB, talk to your RB care team.
Retinoblastoma Research Priority #1: Early Diagnosis
Facilitators: Dr. Ashwin Mallipatna, Ana Janic, Bronte Lim
Background:
Retinoblastoma Research Priority #1 asks, “How to increase early diagnosis of retinoblastoma?”. We know that earlier diagnosis of RB leads to improved health outcomes and less intensive treatment.
Session Summary:
This year’s workshop on Priority #1 began with an overview of early detection of RB by Ashwin Mallipatna. He then introduced thetopic of red reflex exams (RRE), examinations of pupil reflections that can reveal problems in the eye which is particularly useful in young children, and its role in decreasing age at diagnosis for RB. We then heard from two families and their lived experiences with RB, providing important insight into the difficulties of obtaining an RB diagnosis in Canada. This highlighted the need for improved RB awareness in both new parents and health professionals.
Next, we heard from Ana Janic, medical student, discussing her project – an in-depth review of the literature on RRE. Ana’s goal is to determine the gold standard method for conducting a RRE, which will help promote RRE education amongst health professionals, thereby facilitating early RB detection. This education is vital, as improperly administered RREs can lead to false positives and false negatives, delaying RB diagnosis.
Lastly, the workshop participants brainstormed the creation of an informational pamphlet on RB and RRE, aimed at parents and health professionals. This pamphlet will not only raise RB awareness, but also empower self-advocacy in parents suspecting eye concerns in their children.
Next Steps:
If you would like to contribute to the development of the pamphlet or participate in future priority #1 working group meetings and workshops, please email us: retinoblastoma.research@sickkids.ca.
Retinoblastoma Research Priority #9: Pathway of Care
Facilitators: Ivana Ristevski
Background:
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?”. Currently, there is no uniformity in how patients receive information about their care; therefore, having a pathway of care may help families adhere to treatments, alleviate distress, and improve patient outcomes.
Session Summary:
Since our last research workshop during the 2020 Retinoblastoma Research Symposium, the work on the project “Retinoblastoma Journey Map” has been ongoing. During this year’s research workshop, the results of the testing of the Retinoblastoma Journey Map were shared with the group. Project leads Ivana and Helen also provided an update on the status of the article which is being written about the project. The aim of the workshop was to use the article’s scientific abstract to draft a plain language summary. The participants read through the scientific abstract together and identified terms and ideas that they felt were necessary to include. Ivana then led a discussion on how to describe the terms and ideas in plain language and the group created a first draft of the plain language summary.
Next Steps:
The attendees of this workshop will be invited to review the completed draft. If you are interested to review the plain language summary, please contact us: retinoblastoma.research@sickkids.ca.
It has been five years since the pan-Canadian priority setting exercise to determine the Top 10 Retinoblastoma Research Priorities was completed. These priorities were created with the aim to align research that is most relevant and valued by patients and health professionals with the funding that is available.
During the last five years, progress has been made through the CRRAB-supported project-specific working groups to address three of the 10 research priorities:
Working Groups
The working groups, with the support of CRRAB who facilitates patient partnerships, meet as needed. The working groups include a diverse group of participants including patients, researchers, and health professionals. If you are interested in joining a working group, please email retinoblastoma.research@sickkids.ca to be invited to the next meeting.
Awards
A new addition to this year’s symposium was the awards ceremony to celebrate members of the RB community who have significantly contributed to CRRAB initiatives. Those recognized this year include:
Patient Champions
Research Champions
Health Professional Champions
Special Acknowledgements
Partnership Award
Morgan Livingstone, CCLS
Hosted by Certified Child Life Specialist, Morgan Livingstone, child life activity sessions took place during both days of this year’s Retinoblastoma Research Symposium. Children participating in-person and virtually were guided through specialized activities while adult attendees could observe and learn more about the importance of effective coping through play, preparation, education, and creative self-expression.
During Saturday’s session, the children made ’EYE am Special’ prosthetic eyes, during which they used household items (stickers, magazine clippings, and markers) to design unique prosthetic eyes to represent themselves in an activity that relied on the use of their creativity . On the second day of the symposium, children were led through a puppet making activity. Each child made a personal puppet and then had the opportunity to shared the unique features and qualities of their puppets to the group.
If you missed the opportunity for your child complete these activities at the symposium, you can download the instructions and worksheets here.
The Canadian Retinoblastoma Society is a registered charity run by a team of committed volunteers, whose mandate is to provide education, advocacy and peer support to Canadians touched by RB. For more information on CRBS please visit rbsociety.ca.
Survivor Panel Discussion
Genevieve Savoie, CRBS president, moderated a panel discussion with RB survivors Jennifer Baca, David Schefter, and Natalia Frasunkiewicz-Watson. The session began with an explanation of CRBS’ mission and values. Next, each panelist had the opportunity to share their own personal story. The session concluded with audience question-and-answer which led to discussions around topics including family dynamics, RB support, genetics, and more.
Gathering
On day two of the symposium CRBS founder Lisa Simson shared her experience of having a child affected by RB. Throughout the 1980s and 1990s, without any existing support networks for families, Lisa formed the Retinoblastoma Family Association that held meetings, created newsletters, hosted fundraisers and shared survivor stories. Brian Cohen, CRBS Secretary-Treasurer, then discussed the transition from the Retinoblastoma Family Association to the Canadian Retinoblastoma Society over the past three decades.
We would like to thank everyone who attended the 2023 Retinoblastoma Research Symposium. Without your commitment and involvement, we are unable to support patient-oriented RB research!
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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 discussion on the topic covered.
The next “Cup of Tea” journal club will take place on Tuesday, March 21, 8:00 – 9:00 PM ET. Our speakers will be Leslie Low, retinoblastoma parent, and Kimberly Courtney, family lead coordinator. Together they will be discussing the article, “An exploratory study of sleep habits in school-aged survivors of retinoblastoma” for which they recently wrote 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.
Time: Tuesday, March 21, 2023, 8:00 PM ET
Duration: 60 minutes
Topic: Sleep habits in school-aged survivors of retinoblastoma
Meeting Link: https://zoom.us/j/99800046240?pwd=aEkzUWozZmV2MVFoOTBRYS82bjZNZz09
If you missed our last “Cup of Tea” event on, “Patients with retinoblastoma and chromosome 13q deletions have increased chemotherapy-related toxicities” led by Jillian Purdy and Dr. Furqan Shaikh you can watch the recording or listen to the podcast version now.
Video recording of the CRRAB “Cup of Tea” Journal Club that was held December 20, 2022.
Podcast of the CRRAB “Cup of Tea” Journal Club that was held December 20, 2022.
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Author: Roxanne Noronha
Each year, CRRAB hosts a Retinoblastoma Research Symposium to bring together retinoblastoma patients, survivors, family members, researchers, and health professionals to connect with peers, learn from each other, and discuss the future of retinoblastoma research and advocacy. While this main purpose is true, it may be difficult to imagine the feeling of attending the symposium if you haven’t participated before. Read what past attendees shared about their experience at the symposium.
[This is a] great opportunity to connect and continue to build relationships with patients and professionals. It helps me feel more informed and confident in advocating for my child’s care. This meeting really helps keep me motivated to continue to participate in CRRAB.
We (CRRAB) have developed so much as a group. Each year we are becoming more influential to others.
The research workshop is the strongest and most meaningful aspect of the symposium. [There’s] value in collaborating with the RB community.
It was great to meet so many people. I didn’t know anyone [in the community] prior to attending.
I have given feedback into studies that has been important. I have been able to connect with patients and professionals I wasn’t able to reach before.
I feel that I have contributed to the promotion of patient voices in research.
It has given us a voice! It connects us to the professionals we didn’t know existed and helps us understand research better. It helped us recognize how many people there are that are fighting for a better future for retinoblastoma.
Attend the next symposium on January 28-29, 2023. Click here to learn more about the upcoming event and register.
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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 discussion on the topic covered.
If you missed our last “Cup of Tea” event on Health Related Quality of Life of Retinoblastoma Survivors led by Michelle Prunier and Alissa Ulster you can watch the recording or listen to the podcast version now.
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Author: Farheen Khan
In the Fall of 2021, I began pursuing a master’s degree in the SickKids Department of Ophthalmology. Being under the supervision of CRRAB co-lead Dr. Helen Dimaras I was introduced to the concept of patient engagement in research and have been fortunate to have patients involved in various stages of my thesis project thus far. My project focuses on adapting a patient-reported outcome measure (PROM), a questionnaire designed to evaluate health-related outcomes from a patient’s perspective for retinoblastoma survivors and two additional groups of ophthalmology patients.
Currently, no well-validated retinoblastoma-specific PROM exists. However, previous research has identified that treatment outcomes related to appearance are important to retinoblastoma survivors. The FACE-Q is a well-validated PROM that was developed to evaluate such outcomes in patients who had craniofacial surgery. For this project specifically, the aim is to adapt the FACE-Q by interviewing survivors and parents to assess its comprehensibility, comprehensiveness, and relevance to their or their child’s lived and treatment-related experiences. The feedback received from patients is then subsequently analyzed and shared with an interdisciplinary team of scientists, health professionals, and patient partners to discuss how to best modify the PROM based on the study participants’ feedback.
Through designing this study, I have experienced firsthand how much a study can be greatly improved by involving patients as research partners. For instance, while designing my study protocol, I incorporated the patient partners’ feedback to ensure that recruitment would be conducted in a way that would be most comfortable for the participants. While designing my interview guide, in addition to the methodologically relevant probes, I was able to include probes suggested by the patient partner. As someone who primarily learned about retinoblastoma and the other ophthalmologic conditions of interest through scientific literature, these additional probes were different from what I had developed and during the participant interviews I saw that they facilitated richer and more holistic discussions. Also, while designing the consent forms, it was critical for all its content to be conveyed as accurately and simply as possible. Through the patient partners’ input, necessary edits were made to attain this goal.
During the interdisciplinary meetings to discuss the modifications to the PROM, it was interesting to note both the similarities and slight differences between the experiences and opinions of the health professionals and patient partners. As the purpose of the study was to develop a comprehensive and relevant PROM, from both the health care service and the patient perspective, learning to balance these interrelated views through open, collaborative, and inclusive discussions was enriching.
Overall, I have found the patient engagement component of my project to be very fulfilling. It has brought to light how resourceful the lived expertise of patients is in guiding meaningful research.