Blog

My Experience Interacting with Kenyan Policy Makers and Cancer…

Author: Hodan Mohamud

My name is Hodan and this past summer in partnership with the University of Nairobi, I was fortunate enough to be a research student in the Dimaras Lab. As a research student I utilized published findings that investigated Kenyans’ experiences with retinoblastoma to develop knowledge translation plans for retinoblastoma genetics. My project’s foundation was focused on a seminal paper that was published in 2017 by Gedleh et al., in which crucial information regarding retinoblastoma genetics was highlighted. Crucial information that ultimately needed to be brought to the awareness of stakeholders such as the government, advocacy groups and health care professionals.

The Kenyan National Cancer Control Program (KNCCP) was one of the knowledge translation plan’s targeted stakeholders. The KNCCP develops a National Cancer Control Strategy every five years and was in the process of prioritizing recommendations for the current strategy. Leveraging an invitation to one of the KNCCP’s monthly meetings, I took the opportunity to present a policy brief centered on current knowledge regarding retinoblastoma genetics in Kenya. Developing and presenting the policy brief was a nerve-wracking experience. I needed to deliver a great presentation so members of the KNCCP would be aware of the crucial findings from the paper. Fortunately, the members of the National Cancer Control Program were extremely encouraging and receptive to my presentation. We had continued conversations about how the KNCCP may incorporate and implement the findings into their future strategies.

Aside from interacting with policy makers, I also met with Kenyan cancer NGO’s. I was fortunate enough to meet with members of the African Cancer Foundation, Kenya Cancer Association, and Hope for Cancer Kids. Kenyan cancer NGO’s work extremely hard to create awareness around the prevention, treatment and management of cancer, alongside supporting those affected by cancer. Many of these organizations hold events in the community to initiate dialogue around health and cancer. One of the more memorable events that I attended was a health and wellness event held on July 7th by the Africa Cancer Foundation called MoveEat. The event promoted messages on how to lead a healthier lifestyle to reduce the risks of cancer. It was super fun, had lots going on and included bouncy castles, Zumba, yoga, and bubble soccer for event participants. It was a great way to get the community actively involved in thinking about their health. Similar events are held regularly by Kenyan cancer NGO’s!

This past summer I was able to witness the hard work required for Kenyan policy makers and cancer NGO’s to reduce the burden of cancer in Kenya. Presenting my policy brief to the KNCCP was a great learning experience to go alongside interacting with Kenyan cancer NGO’s. I hope conversations will continue to develop between researchers and policy makers so that crucial findings can make their way into policy that benefits all stakeholders.

ARVO Conference 2018

On July 18-21, 2018, the Ocular Oncogenesis and Oncology Conference was held in Lisbon, Portugal. Here we share the presentations that addressed retinoblastoma:

Dr. Brenda Gallie, Retinoblastoma can be a Zero Death Cancer

https://youtu.be/bL3fxg1lKGQ

Dr. Jesse Berry, Aqueous humor as a surrogate tumor biopsy: The Future of personalized medicine for retinoblastoma

https://youtu.be/WHdXip0erOw

Dr. Junyang Zhao, Coordinating care across a large population: Management of retinoblastoma in China

https://youtu.be/jVId3Yb0vVU

Dr. Jasmine Francis, Current treatment of retinoblastoma ophthalmic artery chemotherapy

https://youtu.be/9B-q6Db0r7U

Dr. Arun Singh, Complications of current oncologic treatments

https://youtu.be/Sk0qn84VoKs

Laurence Desjardins, The future in management of ocular tumors: Multicenter initiatives 

https://youtu.be/AIYYytaUzL0

Upcoming Retinoblastoma and Patient Engagement Meetings

The following is a schedule of upcoming retinoblastoma meetings for those who are interested. Links with more information are provided for each.

Retinoblastoma Meetings:

50th Annual Congress of the International Society of Paediatric Oncology
Location: Kyoto, Japan
Dates: November 16-19, 2018

3rd Annual Canadian Retinoblastoma Research Advisory Board Meeting
Location: Toronto, Canada
Dates: January 26-27, 2019

International Society of Ocular Oncology (ISOO) Biennial Conference
Location: Los Angeles, USA
Dates: March 22-26, 2019

Patient Engagement Meetings:

Foundations for Patient-Oriented Research (Edmonton)
Location: Edmonton, Canada
Dates: October 18-19, 2018

2018 Patient-Centered Outcomes Research Institute Annual Meeting
Location: Washington, USA
Dates: October 31-November 2, 2018

Strategy for Patient Oriented Research Summit 2018
Location: Ottawa, Canada
Dates: November 13-15, 2018

Patient-Oriented Research Training Program
Location: Online
Dates: Spring 2019

Volunteer Opportunities

Volunteer opportunities are available with RB Canada Research! The time commitment is approximately one hour per month. If interested, please email retinoblastoma.research@sickkids.ca.

2018 Hellenic Heritage Outstanding Achievement Under 40

Dr. Helen Dimaras, (Scientist, The Hospital for Sick Children) founder of the Canadian Retinoblastoma Patient Engagement Strategy, was presented with the 2018 Hellenic Heritage Outstanding Achievement Under 40 award at the 22nd Annual Gala for the Hellenic Heritage Foundation on June 1, 2018. The award was in recognition of Dr. Dimaras’ research and humanitarian efforts to help children with retinoblastoma.

A short video was prepared to showcase this achievement. Watch the video to learn more about Dr. Dimaras’ work and hear from her colleagues about her accomplishments.

Retinoblastoma Awareness Table

Author: Max Gelkopf, BSc

My name is Max and I’m a research student working in The Dimaras Lab. I’ve been incredibly fortunate to work with The Canadian Retinoblastoma Research Advisory Board (CRRAB) for the last year, specifically with the priority setting project and more recently with the patient engagement strategy. As a student I’ve truly appreciated the opportunity to learn first hand about the research field from a diverse group of patients, health professionals, and researchers. I’ve been able to see immense growth of CRRAB throughout the last year. We’ve seen an increase in CRRAB membership, registry involvement, social media engagement and overall interest. As CRRAB continues to grow, we continue to think of new strategies to improve our patient engagement strategy.

This summer we initiated a Retinoblastoma Awareness Table in the Retinoblastoma Clinic at SickKids. During the monthly retinoblastoma follow up clinic we hosted a table outside the Eye Clinic with information on The Canadian Retinoblastoma Research Registry, infographics, colouring pages, and Elli the Elephant.

We even had elephant feet on the ground to help people find Elli outside the clinic!

We had many interested people approach us to learn more about the Registry and CRRAB, taking our promotion materials. We also had a lot of fun colouring some great pictures of crabs and eyes.

If you want to help creating your own awareness table, please email retinoblastoma.research@sickkids.ca for materials and guidance.

Monocular Vision Development Research Q&A

Authors:
Richelle Baddeliyanage
Coordinator, Retinoblastoma Champion Program
Retinoblastoma Survivor

Dr. Ben Thompson
Professor and Associate Director for Research, University of Waterloo
Adjunct Professor, McGill University
Professor, University of Auckland

Dr. Ari Chakraborty
Brain Canada Fellow, University of British Columbia
Adjunct Assistant Professor, University of Waterloo

Introduction:
Richelle interviews Ben and Ari to learn more about their monocular (one eyed) vision development research.

Research Overiew:
The goal of our retinoblastoma-related research is to understand how the removal of one eye in childhood effects subsequent development of the visual system. During the early years of life, the brain learns how to interpret information from the eyes and modifies its structure and function to optimize vision. Eye conditions in childhood that impair the ability of the two eyes to work together (binocular vision) such as the misalignment of one eye (strabismus) or unequal focusing power between the two eyes (anisometropia) can disrupt this developmental process and cause vision impairment later in life. The loss of one eye in childhood may have similar effects. Alternatively, the brain may learn to use the remaining eye normally because there are no conflicting signals from the other eye. To investigate this question we used a multimodal approach, comprising behavioral and neuroimaging experiments, to compare the visual system in children with one eye with an age-matched control group. A particular focus of our research was motion perception because previous research from York University, led by Dr. Jennifer Steeves had reported motion perception deficits in adults with a history of monocular enucleation. We investigated whether motion perception was affected earlier in development by inviting school-aged children with one eye to participate in our study. We found that all of our participants had normal clinical measures of vision (visual acuity, contrast sensitivity etc.), however our participants with one eye had a different pattern of results on our motion perception measure. Motion perception was normal when images moved from the temple towards the nose, but worse than normal when motion was from the nose towards the temple. Our neuroimaging data suggest that this difference in the development of motion perception involves a region the cerebral cortex called the middle temporal area. Our results have improved our understanding of vision in people who experience monocular enucleation in childhood. The results also help us to understand the role of binocular vision in normal visual development and provide a neural signature that may be useful to detect binocular vision problems in children with two eyes.

Question & Answer:

Richelle: Can you speak to the importance of your research and how it affects retinoblastoma patients.

Ben & Ari: Unilateral enucleation for retinoblastoma typically takes place in early childhood when visual brain areas are rapidly developing. The human brain has evolved to process information from two eyes. Therefore, unilateral enucleation has the potential to considerably alter visual system development. Our research aims to map the effect of unilateral enucleation on visual development. In particular, our studies are designed to identify whether unilateral enucleation effects vision in healthy eye of children with a history of retinoblastoma. Any effects that are detected could potentially be addressed using rehabilitation techniques such as visual perceptual learning – targeted training of specific visual functions.

Richelle: You mention that a study led by Dr. Jennifer Steeves found “motion perception deficits in adults with a history of monocular enucleation”. Did the adults also have normal motion perception when images moved from the temple towards the nose, but worse than normal motion perception when images were moved from the nose towards the temple? Did these adults have an enucleation in childhood?

Ben & Ari: The 2002 study by Dr Steeves reported a similar bias in motion perception towards nasalward motion, whereby the motion perception was better when moving dots moved towards the nose than when those dots moved towards the temple. All but one of the participants in the study had an enucleation in childhood.  Our theory is that the motion perception asymmetry occurs because of altered visual input to the brain when it is still undergoing rapid development in childhood. We predict that unilateral enucleation in adulthood would not have the same effect because the development of visual brain areas is complete.

Richelle: Your research results indicate that motion perception is challenged in children who have lost one eye early in life. Would you expect similar results in patients that didn’t have an enucleation but had very poor vision in one eye (e.g., only light perception)? Has research examined if other senses such as hearing compensate for the loss of vision?

Ben & Ari: This is a very interesting question and one that we are actively pursuing. There are a number of conditions that can cause a difference in vision between the two eyes in childhood. These include an eye turn (strabismus), a blurred image in one eye due to refractive error and childhood cataract affecting one eye. A difference in the images seen by each eye in childhood can alter the development of visual brain areas resulting in abnormal processing of information from the affected eye within the brain, a condition known as amblyopia. A number of studies have identified motion perception deficits in individuals with amblyopia, however motion asymmetry has not yet been studied. We currently have three active projects investigating this question. These projects currently focus on participants with a history of childhood cataract in one eye.

Richelle: In children who have had monocular enucleation, are there any aspects of visual function that are enhanced during development?

Ben & Ari: Although we did not observe any enhancement of vision in our study of children, previous studies have reported better visual acuities in adults with a history of childhood monocular enucleation in comparison to a control group who completed testing wearing an eye patch.

Richelle: Are there any exercises/activities that can help mitigate the effects of monocular vision? Alternately, do you imagine any advancements in the future that would mitigate motion perception deficits in monocular enucleation?

Ben & Ari: It is certainly possible that training on vision tasks using a technique called perceptual learning could improve motion perception in children with a history of monocular enucleation. The next step for us it to understand the origin of the motion perception asymmetry within the brain. We have been pursuing this question using a brain imagining technique called Magnetoencephalography (MEG). Once we understand the origin of the asymmetry, we may be able to design techniques to treat it.

Richelle: What information is useful for parents trying to understand challenges resulting from their monocular vision? As you know, the Canadian Retinoblastoma Research Advisory Board is committed to patient engagement in research including the translation of research findings. How can we make sure retinoblastoma patients are aware these challenges?

Ben & Ari: This is an excellent question. Through forums such as this blog, we hope to make our research accessible to parents. We are also always open to new ideas on how best to communicate our research to parents.

Richelle: What are your recommendations for further studies that focus on the removal of one eye in childhood?

Ben & Ari: A key issue that we face as researchers is being able to enroll enough participants in our studies to reach scientifically valid conclusions. Future research should endeavour to include more participants. In addition, the rapid development of advanced neuroimaging techniques provides us with an excellent opportunity to understand the effects of childhood unilateral enucleation on the structure and function of the brain. This information could then be used to guide the development of treatments for any vision problems that are detected in the healthy eye of children with a history of unilateral enucleation.

To learn about opportunities at the Human Visual Neuroscience Laboratory at the University of Waterloo, email hvnl@uwaterloo.ca.

The Helen Keller Prize for Vision Research

On May 1, 2018, Dr. Brenda Gallie was honoured as 1 of 4 Scientists to receive the Helen Keller Prize for Vision Research.

The other 2018 Helen Keller Laureates are:

• Webster Cavenee, PhD, Ludwig Institute for Cancer Research, University of California, San Diego
• Thaddeus Dryja, MD, Harvard Medical School and Massachusetts Eye and Ear Infirmary
• A. Linn Murphree, MD, Keck School of Medicine, University of Southern California

This award honours scientific excellence in vision research, and is presented by BrightFocus Foundation.

As published on the BrightFocus Website:
“Helen Keller remains a timeless, iconic name in the battle against blindness. The Helen Keller Prize for Vision Research therefore bestows a unique, peerless honor on the outstanding vision researchers who receive it,” said Robert Morris, MD, President of the Helen Keller Foundation for Research and Education.

“This year’s prize recognizes how collaboration across scientific disciplines can to lead game-changing breakthroughs. The 2018 Laureates are exemplary researchers who are driving the ability of science to save sight,” said Stacy Pagos Haller, BrightFocus Foundation President and CEO.

Child Life Blog: Using Social Narrative Stories for Preparation…

Author:Morgan Livingstone MA CCLS CIIT

The hospital experience can include many disruptions and can be difficult for even the happiest child. For children and families facing a retinoblastoma diagnosis and the treatments that follow, there can be a feeling of sensory overload with so many smells, sounds, textures and bright lights. The unpredictable nature of wait times can be frustrating and stressful, with very little time to transition from one appointment to another, or from one assessment to another test. So many specialists, doctors, nurses and medical team members mean many new people to meet. Changes from the familiar routine, and changes in familiar foods, and even fasting before procedures and surgeries can all add to the difficulties children and families face in clinics, hospitals and healthcare settings.

But what if there was something you could do to improve this experience? Even just a little bit?

With a little preparation for upcoming procedures, check-ups and tests, children of all ages can cope better.

Why is preparation helpful to a child?

Decreases fear and anxiety.
Promotes long-term coping to medical challenges and experiences.
Increases cooperation with medical team.
Clarifies misconceptions and misinformation.
Some simple ways that parents and caregivers can prepare children for upcoming appointments can start with using familiar wording and strategies to keep things consistent. Focus on the sensory experience and gently offer positive touch in areas child(ren) may be touched often like their faces, near and around their eyes. Take turns with this gentle play and let your child practice these gentle touches and strokes on your face as well. Parents and caregivers are being watched by children at all times, so you can also model appropriate behavior and use stress management techniques to improve you own coping. Offer children coping strategies – this can include something as simple as a hug, or pacifier, or deep breathing activities like blowing bubbles or a pinwheel toy. Naturally parents can offer positive reinforcement and verbal praise as children learn to navigate their medical experience, learning what they need to do to be and feel successful.

Teaching steps and skills using stories:

Children learn a great deal about social norms through stories. Whether you tell stories verbally, read books together, listen to audiobooks, or even sing songs that tell stories, these are wonderful ways to communicate and explore what happens in different situations and what to do or how to do something when facing a challenge. It can be fun to create your own family songs for different routines like bath time and mealtimes using a familiar melody from children’s songs and nursery rhymes. Songs can also be created to help prepare and explore the steps a child goes though during medical experiences.

Here is an example of a creative song about an Eye Ultrasound, sung to the tune of Jingle Bells:

Slip and slide
Slip and slide
On the special jelly
Cold and wet is how it feels to help you see inside!

Written by Daisy Lloyd and Morgan Livingstone

There are many helpful published books that explore hospitalization and medical experiences for children of all ages. Many can be found at mainstream bookstores, while more specific RB focused books can be found though charities like CHECT here:

https://chect.org.uk/about-retinoblastoma-2/childrens-area/rb-and-me-1-6/

Social Narrative Stories:

Social stories were developed by Carol Gray in the 1990’s as a way to explain social interactions and situations for young children. Though the extension of these social stories, child life specialists and parents can create customized narrative stories for children with RB to help familiarize and prepare them for routine procedures and any other aspect of care that they will experience over the course of their treatment.

There are some simple components to consider when creating your own social narrative story:

• Predictability
• Sensory Components
• Appropriate Behavior
• Short/Concrete language
• Key Details

A team of child life specialists and psychologists at Boston Children’s Hospital have created many FREE preparation stories for difference medical experiences and appointments that you can download here:

http://www.childrenshospital.org/patient-resources/family-resources/child-life-specialists/preparing-your-child-and-family-for-a-visit/my-hospital-story

Big thanks to child life specialists Kristin Dietzel and Andrea Lerude, and psychologist Dr. Carrie Mauras.

Here is a narrative social storyto help prepare a child with RB (and their family) for a routine Examination Under Anesthesia.

Preparing for an EUA book

Environment and preparation:

Despite all the knowledge we have about the benefits of a child friendly environment on a child’s medical experience, not all clinics are child friendly. Parents can improve this routine experience by planning ahead and bringing familiar items with them that will help make this space more comfortable for their child. Bring your own favorite story books, a blanket, pillow or special stuffed toy that helps as a comfort item for your child and even consider “creating” a safe space for your child within their stroller.

When appropriate, always bring favorite snacks and a few quiet activities that will help your child engage in play, express themselves and offer normalization.

When creating social narrative stories, you can take actual photos of the hospital or clinic environment with you and your child in the photos. This can help with familiarization and preparation for each step of your visit, assessments and procedures. However, as children get older they can be encouraged to help with the creation of these stories and assist by writing the narrative, drawing the pictures and adding the details they feel are important to them…..especially whether they think pizza or ice cream is needed at the end of the story.

Teaching children coping skills can become a creative opportunity to use imagination to relax your body. Here is an example of a simple coping skills story using mindfulness meditation created by a child and a child life specialist:

• 

• 

• 

• 

WE all want the best for children:

Best possible outcomes mean’s working together to prepare and communicate the medical experience clearly so that children know what to expect and can practice these steps, which promotes mastery. Creating social narrative stories can be a fun part of everyday life, like mealtimes and toileting, or it can have an important purpose in preparing them for upcoming procedures, appointments and examinations.

Work with your medical team to ensure you know what to expect, talk to other families about their experiences, and seek out help from Child Life so that you can better prepare yourself and your child for appointments. This can reduce stress and relieve undue worry that many children and families face when they don’t know what will happen, and imaginations can run wild. Instead try using imagination to create stories, songs and narratives you will all enjoy together!

About the Author:

Morgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer that is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma. Working as the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website Child Life Sections, and speaks globally about child life supports for children with RB. Most recently, Morgan has been providing enriched multi-day child life programming for children of all ages at both the 1 RB World meeting in Washington, D.C in October 2017 as well as the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.

In addition to her work with RB, Morgan writes and creates resources for children and adults, participates in child life research studies, and was the winner of the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery for their operation.

Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters

http://www.haywiregroup.com/files/8014/6601/9104/Worry_Eaters_Parents_Guide_pdf.pdf