Bridging the Gaps: How Community and Shared Responsibility Create the Best Retinoblastoma Care

Monday May 27, 2024

Being the parent of a child with retinoblastoma, living with the effects of this cancer, or caring for patients can be a frustrating experience. With an emphasis on our year-long theme of early diagnosis, we look at some of the challenges facing our retinoblastoma world, and for each, three ways we can work together to advance care for everyone.

Three young girls sit one behind the other as they enjoy riding together down a slide. The girl at the back has curly brown hair and wears a light pink sweater. The middle girl has blonde hair and wears a light purple shirt. The girl in front has light brown hair, wears a pink top, and holds a plaid cushion. They are surrounded by green foliage and trees in the background. The sun creates halos around their hair as it blows with their movement down the slide, and blue sky is seen in the top right corner, beyond the trees..

One Community Sharing Responsibility

The Hawaiian spirit of kaiāulu lies at the heart of our diverse One Retinoblastoma World. Our global desire for optimal retinoblastoma care is driven by shared experiences, challenges, and triumphs. Embracing the warmth of inclusive community, kaiāulu beckons us to unite in our mission to overcome childhood eye cancer and its lifelong impacts.

On this shared journey, every voice matters. Whether parent, survivor, clinician or scientist, we are all experts by experience, with valuable stories, struggles, and solutions.

WE C Hope USA is currently planning the 7th One Retinoblastoma World meeting, in collaboration with Rb specialists in the USA and Australia. One Rb World takes place October 15 – 17, 2024 in Honolulu, Hawaii. Uniting parents, survivors, medical professionals, and research scientists, the event builds community, conversation, and collaboration to address big challenges in acute and lifelong Rb care. A diverse roster of speakers and session topics await, and we’re excited to welcome you.

Knowledge, experience, and deep desire for the best care creates an individual and collective responsibility to act for all in our community. “Kuleana” is a profound Hawaiian sense of individual and group responsibility. Through One Rb World, we combine our diverse insight and skills to foster prompt early diagnosis; safe, effective care; and empowering support for all.

Focusing on our year-long theme of early diagnosis, here are some key ways we can work through big challenges with kaiāulu and kuleana, to advance care for our One Retinoblastoma World.

Early Detection and Diagnosis

Delayed diagnosis challenges families and healthcare providers worldwide. Many parents and doctors don’t recognise the early signs, and when parents do raise concerns, they are often dismissed by healthcare providers.

Families, survivors, retinoblastoma specialists and researchers recognise late diagnosis as a critical issue. Delays destroy sight and kill children every day around the world. The journey to conquer this cancer begins with three crucial steps: awareness, screening, and referral.

Awareness of the early signs, such as squint (turned eye) or leukocoria (white pupil), is the first line of defence. Yet, knowledge alone is fruitless. Accessible, regular eye screenings are needed to catch these signs early. Finally, specialist referral is the bridge between detecting the signs and diagnosing the cancer. All three are needed to support swift, safe, and effective care.

The One Rb World community aims to develop common messaging and impactful campaigns, access to primary eye care, and streamlined referral guidance to improve early diagnosis.

Awareness

Enhancing awareness is vital, as early detection significantly improves treatment outcomes and quality of life for the child and their family. This is a collaborative effort, requiring knowledge and vigilance at all levels of society and healthcare provision.

For most families, the path to diagnosis starts at home, observing subtle changes that can be easily dismissed – by both caregivers and clinicians. Awareness campaigns and shared knowledge empower everyone to recognize and act on potential warning signs early.

Three ways we can enhance public and healthcare awareness:

Personal Awareness: clearly understand the early signs and their intricacies so we can confidently and accurately explain them without causing unnecessary alarm.
Educational Materials: Collaborate to develop consistent messaging, informative resources, and engaging awareness campaigns, and distribute them to places frequented by young families and healthcare providers.
Advocacy: Advocate for inclusion of retinoblastoma early signs information in Parent & child health resources, public health campaigns, medical education curricula, and through media outlets, supporting consistent education to a broad audience.

Screening

The most common early signs of retinoblastoma – white pupil and eye turns – can be caused by many other blinding conditions, none more important than childhood eye cancer. Regular eye exams play a pivotal role in detecting eye problems in childhood, including identifying retinoblastoma at its nascent stages.

Healthcare providers, especially family doctors, paediatricians, and primary eye care providers, are on the frontline, responding to parent concerns and providing routine child health checks. Across the world, routine eye screening assessments during childhood can vary greatly. However, integrating screening into routine health care can detect eye cancer and other potentially blinding eye conditions early, facilitating prompt action and referral to specialist care.

Three ways we can help improve screening for early detection:

Education: Develop initiatives and distribute resources to help healthcare providers perform effective eye exams, recognize signs of retinoblastoma and other potentially blinding eye disease, and refer appropriately to facilitate the best possible care.
Eye Exams: Promote the use of regular eye screenings for children, and encourage parents and primary healthcare providers to include eye exams in routine child health checks.
Access: Engage with and support initiatives that aim to provide free or low-cost eye screenings, especially in underserved communities.

Referral

When signs are detected, it is paramount that healthcare providers swiftly refer the child to a specialist retinoblastoma team for accurate diagnosis and appropriate treatment. The urgency and efficiency of referral processes determine how quickly a child receives care, and this directly impacts their life and vision prognosis, and quality of life.

Effective referral hinges on the knowledge and responsiveness of the entire healthcare network, including general practitioners, primary eye care, medical support services, and paediatric and ocular oncology specialists.

Three ways we can support rapid referral:

Build Bridges: Create clear, efficient referral pathways that ensure rapid access to specialist care.
Identify Challenges: Clarify and understand the barriers to swift referral, including practical, financial, and psychological obstacles.
Provide Support: Establish support networks for families navigating the referral process, offering guidance, practical, financial, and emotional supports that address key barriers to care.

By enhancing awareness, screening, and swift referral together, we mount the strongest response to retinoblastoma at the earliest possible stage. Each family, survivor, medical professional, and researcher holds a piece of the puzzle. With a comprehensive approach to early diagnosis, we offer children the best opportunities for life and sight saving care.

Medical Care

A range of treatments exist for retinoblastoma, depending on the number, size, and location of tumours; and whether one or both eyes are affected. A range of other factors also influence treatment, such as availability, insurance coverage, and the family’s ability to complete treatment.

When a child if first diagnosed, parents usually have little knowledge about the cancer or treatment options. Decisions must be made fast, and parents trust their medical team to guide them through their options.

The child’s care often involves multiple subspecialties and sometimes shared care over several hospitals. The family relies on the medical team to stay in touch with one another. Significant confusion and overwhelm can arise when parents receive conflicting information from different doctors or departments. In extreme cases, this can have tragic consequences.

Three ways we can advance medical care:

Insight: Share our experiences of treatment access and delivery challenges, and work together to identify and implement solutions.
Consent: Explore the barriers to making informed decisions, and what parents/survivors need for effective consent. Develop informed consent and communications processes to support optimal decision-making by all parties in the circle of care.
Research: Advocate for robust research that can generate evidence to guide decision-making, and support the evolution of safe treatment, always putting life and wellbeing of the whole child first.

Family Support

Retinoblastoma requires specialist care that is available at only a handful of highly developed hospitals. Most families have to travel great distances every 3-12 weeks for several years while their children are very young. This puts great strain on family resources, relationships and personal reserves. As families are widely scattered, communication and support from those with shared experience is limited. These challenges combined impact a child’s outcome, and the family’s quality of life during treatment and beyond.

Children with retinoblastoma are very young, and the cancer experience can overwhelm their natural ability to cope. Repeated medical procedures, family stress, loss of routine, uncertainty and physical illness all impact the child’s development and emotional wellbeing. Supports implemented from diagnosis throughout treatment can significantly reduce these impacts.

Most retinoblastoma treatment takes place in teaching hospitals, where families value the opportunity to help medical students and doctors learn about childhood eye cancer. This collaboration enhances understanding of retinoblastoma, which is crucial for early diagnosis. Still, it is important to manage these interactions with sensitivity to avoid children and their families feeling they are under scrutiny. Thoughtful engagement can help preserve dignity, and minimize potentially life-long impact on self-esteem and confidence in the developing child.

Three ways we can advance family support:

Research: Identify research needed to understand how retinoblastoma impacts the diagnosed individual and family, during treatment and throughout life, and be actively involved in the research process.
Supportive Care: Work with hospitals to develop and integrate psychosocial supports into all aspects of retinoblastoma care, from child life provision to sensitive medical training.
Programs: Engage with Rb support programs that serve your hospital, region, or country, to help grow the community and available resources.

Two small group discussions are taking place around separate tables.

A small group discussion at One Rb World 2017 in Washington D.C.

Life Beyond Retinoblastoma

Though treatment for retinoblastoma has advanced significantly over the past 30 years, life-long care remains limited. Survivors are widely scattered, and few retinoblastoma-specific long-term follow-up programs exist.

The risk of genetic inheritance and second cancers hangs heavy for many survivors. This is compounded by poor access to informed medical professionals or ongoing survivorship care. Survivors are often reluctant to discuss these risks or experiences, feeling a strong sense of responsibility to minimise worry among their peers and parents whose children have been recently diagnosed.

Genetic testing identifies risk of retinoblastoma and second cancers for each individual and family, but access to genetic counselling and testing is ad hoc for most. As a result, many survivors do not receive appropriate care, and children of retinoblastoma survivors are often not diagnosed as early as they could be.

Survivors often become experts on retinoblastoma and their own risk. However, most encounter challenges when seeking care from their primary doctor, who rarely knows the life-long implications of RB1 mutation or cancer treatment in infancy. Within the retinoblastoma community, differing opinions on appropriate survivor care creates confusion and slows access to care.

Three ways we can advance life-long care:

Impacts: Talk openly about the physical and psychological impacts of treatment, heritability, and second cancer risk, and access to information and ongoing care.
Genetics: Advocate for high quality genetic counselling and genetic testing, accessible to all families and survivors as standard care.
Care Guidelines: Work together to develop agreed survivor care guidelines, including second cancer screening and mental health care.

A silhouette of five people balancing on plinths of different height and width, holding hands to form a series of arches against a vibrant sunset. The sky is a canvas of warm orange and yellow hues. Above, a quote by Leonardo da Vinci reads: An arch consists of two weaknesses, which, leaning on each other, become a strength.

Join Us at One Retinoblastoma World – Hawaii

Retinoblastoma is a very great challenge – for children, parents, survivors and the medical professionals who dedicate their lives to making ours better. Yet this challenge and our collective experience gives us an even greater opportunity to work together to overcome it.

One Retinoblastoma World is a unique forum, inviting everyone to explore the best ways to achieve optimal care. We progress by hearing different perspectives, asking questions, listening to one another, sharing ideas, and creating practical solutions together.

Three Reasons You Need to Participate in One Rb World 2024 in Hawaii:

Network with other parents, survivors, and professionals.
Help increase understanding of retinoblastoma and its impacts.
Help develop real-world solutions to the challenges experienced.

On October 15-17, we converge in Honolulu to advance care together, nourished by the power of Kaiāulu and Kuleana. Here is our symbolic meeting place, among the islands’ beauty and the vast ocean beyond. They encourage us to weave life, vision, and hope into our discussions, evolving strategies, and goals.

One Rb World is an empowering breath of fresh air. At this 2024 meeting, the Aloha spirit promises to strengthen bonds on our long-shared journey to a future where no child, survivor, or family suffers needlessly from retinoblastoma.

WE C Hope USA is proud to be hosting the 7^th One Rb World conference. We look forward very much to sharing this inspiring, impactful meeting with you!

Find Out More and Register Today!

About the Author

Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.

Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.

Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.

Abby is wearing a blue and white patterned top, dark pink collared cardigan, and light blue patterned skirt, and a heart necklace. She is pictured with her black German shepherd - golden retriever guide dog, who is wearing a pink collar with guide dor tag showing. Both are smiling broadly. The background is a bed of bright orange marigolds, a low hedge and tall trees.

Read the story of how WE C Hope began.

Bridging the Gaps: How Community and Shared Responsibility Create the Best Retinoblastoma Care

One Community Sharing Responsibility