The First Alphabet of Hope
In 2012, for the first One Retinoblastoma World meeting in London, we produced a beautiful Alphabet of Hope, with insights and reflections from families affected by retinoblastoma around the world. Every 2 weeks throughout 2018, we shared via social media a word and accompanying thought from the Alphabet, to help raise awareness of different experiences through the retinoblastoma journey.
Perspectives shared through the Alphabet of Hope spoke to people who had no previous experience of childhood eye cancer, to family members, medical professionals and individuals with different personal experiences. It sparked conversation and gave a voice to subjects infrequently discussed.
As our sharing of the Alphabet of Hope drew to a close, we began to think about how different aspects of the retinoblastoma experience could benefit from this simple form of expression, and the possibility of beginning a new Alphabet in 2019. And so the Alphabet of Hope began to evolve.
Explore the Previous Alphabets of Hope
- 2018 (2012) – #AlphabetOfHope
- 2019 – #LifeBeyondRb
- 2020 – #FamilyInSight
- 2021 – #MindAndBody
- 2022 – #RbCare
The 2023 Alphabet – #RbResearch
Retinoblastoma is the most common eye cancer in children. A complex cancer requiring specialist care, it has potentially lifelong impacts on the child and their entire family. Research focused on early diagnosis and referral, all aspects of medical and psychosocial care, and survivorship can improve the cancer experience, outcomes, and quality of life.
The #RbResearch Alphabet of Hope highlights key questions and realities for all who research this unique cancer or fund the research, who care for affected individuals, and advocate for best patient, survivor, and family care.
Please follow this year’s #AlphabetOfHope!
- Look out for the regular Alphabet posts shared on Twitter and our Facebook Page (both @wechope). We’d love to read your feedback and hear your experiences of #RbResearch as we share each letter – whether you are a parent, survivor, medical professional or researcher. Please join in the conversation on our social media throughout the year.
- Search for our posts using the hashtags #AlphabetOfHope and #RbResearch.
- Visit this page for all published letters and signposts to further resources on our website. You can navigate to the page quickly at wechope.org/alphabetofhope
The Current Letter
#RbResearch Alphabet of Hope 2023
Complete Text and Resources to Date
A
Access To Care is unequal globally, with poorer outcomes for children in low-resource settings. What are the main barriers to care, and how can optimal access to care be delivered, including in rural and remote communities?
Further Resources:
Access to Care is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
International Care: Challenges and Opportunities
Rb Survivor and WE C Hope CEO, Abby White explores the challenges families experience in seeking international care, and what can be done to help improve outcomes for their children.
B
Bedside to Bench to Bedside: evidence-based retinoblastoma care begins with real-world patient, survivor and family needs (bedside) that stimulate meaningful research (bench) and rigorous studies to improve care (bedside).
Further Resources:
Retinoblastoma Research: Types, Challenges, Opportunities
Rb Survivor and WE C Hope CEO, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges in retinoblastoma.
C
Care Pathway: Retinoblastoma care is complex and individualized. How can we best provide treatment and follow up care pathway tools that support family understanding of the care plan, reduce stress, and improve outcomes?
Further Resources:
Care Pathway is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
TNM Staging System for Retinoblastoma
Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.
D
Decisions. Parents and professionals face tough choices in retinoblastoma care. How do they navigate complex shared decision-making, and how can we all reduce risk of cognitive bias to ensure the child’s optimal care?
Further Resources:
Ethnography: A New Frontier in Retinoblastoma Research
Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.
E
Early Diagnosis leads to better outcomes with less intense treatment. How can we best raise parent, public and medical community awareness of common first signs (leukocoria, “white eye reflex”; and strabismus, “turned eye”)?
Further Resources:
Early Diagnosis is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
Retinoblastoma Awareness, Screening and Early Detection at One Rb World
Sessions at every One Rb World explore how we can best raise parent, public and medical community awareness of common first signs, and develop effective screening for early detection. Watch the sessions from our 2017, 2020, and 2021 meetings.
“Have We Spoken Before?” Same Retinoblastoma Diagnosis Story, Different Parents…
Orthoptist and Rb care coordinator, Sandra Staffieri, and leukocoria awareness advocate, Megan Webber, are frustrated by repeated stories or diagnosis delays and their negative patient impacts. They explore why these delays continue, some efforts to overcome the challenges, and where they find hope for the future.
F
Follow Up Care is vital to detect new/relapsed retinoblastoma early, identify side effects, and address lifelong impacts and risks. How do we ensure all patients and survivors have prompt diagnosis and best care?
Further Resources:
Follow Up Care is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
Retinoblastoma Follow Up Care: the Long and Winding Road
Child Life Specialist Morgan Livingstone reviews what follow up care may involve, and tips to help families and adult survivors navigate this stage of medical care.
G
Genetic Knowledge Is key to quality care of children with retinoblastoma and blood relatives, during treatment and beyond. What do parents, survivors and professionals know and understand, and how can we improve genetic care?
Further Resources:
Meet Alice, Jamie, Megan, Rachel, Peter and their families, and find out how genetic knowledge can influence treatment, screening and lifelong care.
H
Holistic Care. Retinoblastoma is a major stressor. Needs vary between Individuals, diagnosis and treatment type. How do we provide culturally competent social, emotional and psychological support to all patients and families?
Further Resources:
Psychological Support is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
10 Child Life Tips for Clinicians
Child life specialist Morgan Livingstone shares 10 simple ways all medical professionals can ease stress and anxiety, support healthy coping, and help children and families thrive throughout simple interactions and complex cancer care.
I
Inclusion in retinoblastoma research is key to understanding long-term impacts and improving care. Researchers who work with our community can overcome the many barriers that hinder participation and real-world findings.
Further Resources:
Len Burns, a blind bilateral Rb survivor and licensed family therapist, considers four major barriers to research participation, and opportunities to overcome them.
J
Journal Access is a global challenge. Too much data remains behind a paywall. How do retinoblastoma professionals and patient families access, understand and use publications to inform care and consent? How can this improve?
Further Resources:
The Informed Parent – 6 Tips for Staying Up to Date in a Social Media World
Dr. Jesse Berry shares her recommendations for being a safely informed parent advocate in the modern hyper-connected age.
DIY Guide to Assess Medical Information and Research
This two part blog gives simple guidance that can help you effectively read and assess medical information, medical news stories and published research articles.
K
Knowledge Transfer. Three-way exchange of clinical and lived experience, and scientific progress is vital to understand and meet patient needs and develop research partnerships that improve patient and survivor care.
Further Resources:
Global Eyes: Connect, Communicate and Collaborate for Cure
We highlight two key meetings on the horizon that will unite professionals, scientists, and parents and survivors who live with the impacts of childhood eye cancer, to advance care for all.
One Retinoblastoma World Sessions Hub
Since 2017, we have livestreamed an recorded One Rb World sessions, and made them available for post-conference viewing. On our YouTube channel, they are grouped into playlists by conference year and also subject area. You can view all playlists at our Sessions Hub.
L
Lifelong: Heritable retinoblastoma survivors have increased lifelong risk of second cancers. What are the risk factors? What do survivors need to know to live well and minimize risk? How do we best share the knowledge?
Further Resources:
Lifelong Care is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
7 Survivorship Tips and Tricks: navigating the adult post-retinoblastoma world
Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey
Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care
Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.
M
Multicentre: About 8000 children develop retinoblastoma worldwide each year. The strongest care-guiding evidence is produced when treatment centres collaborate. How can we improve research cooperation and reduce competition?
Further Resources:
Multicentre Collaboration is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
Multicentre Research Collaborations for Retinoblastoma
In part 1/2, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome the challenges Rb research faces, to change patient care and outcomes – for the child, survivor, family and professional.
Multicentre Research Collaboration: the Challenge and the Light
Part 2 explores common challenges to multicentre collaborations, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.
N
Neonatal: Babies born to parents with pathogenic RB1 gene have 50% retinoblastoma risk. What cancer screening, delivery plans, newborn care, and infant mental health supports are best for these babies?
Further Resources:
How Do I Create A Family When I Have An RB1 Mutation?
Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of the Heritable Rb experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..
Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family
Dr. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed with retinoblastoma.
7 Ways Caregivers Can Support Infant Mental Health during Cancer Care.
Morgan Livingstone CCLS discusses how the external environment influences infant mental health, and the varied ways parents and medical professionals can help babies cope and thrive through medical interventions.
O
Ophthalmology: retinoblastoma and its treatment impact the eye and vision, directly or years later. Vital lifelong eye care for all survivors is often inconsistent. How do we improve knowledge and ocular health care?
Further Resources:
Retinoblastoma Treatment and Vision – The Double-Edged Sword
Sandra Staffieri, orthoptist and Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reviews how different retinoblastoma therapies can impact the eye and vision, and how parents can support their child with changing vision.
P
PTSD affects many children with retinoblastoma, survivors, and their families. What are the causes and impacts on physical and mental health? How can we reduce risk and provide effective mental health care throughout life?
Further Resources:
Beyond Stress: PTSD Symptoms, Resources, Strategies and More
Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.
Q
Questions relevant to patient care and outcomes must guide retinoblastoma research. Collaboration between clinicians, researchers, parents, patients and survivors can shape effective study focus and design.
Further Resources:
Questions to Ask the Medical Team and Yourself
When a child has Rb, asking questions empowers parents to gain knowledge and make informed Decisions. Ask many questions when making decisions about your child’s care. These question lists covering different aspects of care can help.
10 Rarely Discussed Subjects in Retinoblastoma
On Rare Diseases Day 2016, we highlighted ten important subjects rarely discussed in Rb care that profoundly impact patients and families. 7.5 years on, they all remain relatively unaddressed. But patient advocates with a collective voice and researchers who embrace patient-led research are finally helping to change this.
R
Relationships: Childhood eye cancer can strain bonds between parents, siblings, parent and child, and extended family. What factors affect relationship resilience and breakdown, and how can we best support at-risk families?
Further Resources:
Bound by Love, Unbound by Cancer: Retinoblastoma through the Lens of Relationships
Linda Conyard MGestT delves into the factors affecting relationships in a family affected by Rb, and the best ways to support families. She also explores attachment theory, and how it can help us understand family dynamics when a child has a risk for, or diagnosis of, childhood eye cancer.
S
Second Cancer: Effective screening for second cancers in people with a heritable pathogenic RB1 gene will improve early diagnosis and treatment. What is optimal screening throughout life?
Further Resources:
Second Cancer Screening is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
