Small group discussions and breakout sessions featured prominently in Washington D.C.
2017 Program – Inspired by Parents and Survivors
Awareness, medical care and family support are as vital to effective care of children with retinoblastoma as food, water and air to life. Removing any of these three elements dramatically reduces a child’s quality of life and chance of survival.
Our One Retinoblastoma World 2017 program evolved from a list of questions commonly asked by parents and survivors. Each question was explored in depth to advance understanding and effective comprehensive care for the whole family.
An individual with expertise in retinoblastoma facilitated each session, and prepared key speakers to deliver short talks that covered a range of perspectives. Following these presentations at the start of each session, open floor discussion and small group work engaged the entire delegation of professionals, parents and survivors in collaborative problem solving.
Critical Questions of Parents and Survivors
Download a PDF of the complete program.
Alternatively, you may wish to:
Below, you can read the critical questions that inspired our 2017 program. Session Leads opened and chaired each session, and introduced 2 – 3 additional speakers, identified for their experience and expertise in the field.
Click on the session title to read the question, a summary of the issues involved and aims of the session, and discover the speakers.
* * * TUESDAY OCTOBER 10TH, 2017 * * *
7:00am – 8:05am: Registration, Breakfast & Networking
8:10am – 8:20am: Welcome & Introduction to One Rb World 2017
Jesse Berry, M.D.
Scientific Program Chair, One Retinoblastoma World 2017.
Associate Director of Ocular Oncology, Children’s Hospital Los Angeles,
Assistant Professor of Ophthamology, USC Roski Eye Institute, Los Angeles, California.
Marissa D. Gonzalez
President and Founding Board Member, World Eye Cancer Hope USA.
Event Chair, One Retinoblastoma World 2017.
Retinoblastoma Survivor.
8.20am – 9:15am: Screening | Sandra Staffieri, Royal Children’s Hospital, Melbourne, Australia
Question: Can we screen for retinoblastoma, and if not, what are the best ways to improve early diagnosis?
Session Lead:
Sandra Staffieri
Retinoblastoma Care Coordinator, Royal Children’s Hospital, Victoria, Australia
Clinical and Research Orthoptist, Centre for Eye Research Australia, University of Melbourne, Melbourne, Australia
Presentation: Think Globally, Act Locally: Awareness Campaigns Around the World – What Works; What Doesn’t or Why is Nothing Being Done?
Speakers
Katherine Paton, M.D., FRCSC
Clinical Professor of Ophthalmology, The University of British Colombia, Vancouver General Hospital; British Colombia Children’s Hospital, Vancouver, Canada
Head, Ocular Oncology & Director of Diagnostic Ophthalmic Ultrasound Imaging, University of British Columbia, Vancouver, Canada
Presentation: Screening in the Developed World: Closing Gaps in Care
Michael Sullivan, Professor
Paediatric Oncologist, Clinical Lead Solid Tumors and Neuro-oncology, Royal Children’s Hospital, Victoria, Australia
Professorial Fellow, Department of Paediatrics, University of Melbourne
Continental President (Oceania), International Society of Paediatric Oncology – Paedeatric Oncology in Developing Countries (SIOP-PODC), Geneva, Switzerland
Presentation: Retinoblastoma in Papua New Guinea: Challenges Faced and Opportunities for Change
Ligia Fu, M.D.
Pediatric Hematologist & Oncologist, Hospital Escuela Universitario, Tegucigalpa, Honduras
Presentation: What Does a Successful Retinoblastoma Awareness Campaign Look Like, and Does it Really Make a Difference?
Session Background: The most common early sign of retinoblastoma is “leukocoria”, a white glow in the pupil of the affected eye that can be seen in low light and flash photos. Specialists agree that early diagnosis is a child’s best hope of healthy vision. In many countries, where advanced cancer therapies are unavailable, early diagnosis is a child’s only hope of cure. Yet many children are not diagnosed until the cancer has filled or escaped their eye, complicating treatment.
Most children are diagnosed when parents seek medical advice after observing white pupil in photographs for several weeks or months. Many encounter referral delays due to poor primary physician awareness.
Parents and doctors ask if regular red reflex tests performed by primary care physicians will improve early detection of retinoblastoma, and what alternatives offer the best opportunities for increasing early diagnosis.
The effectiveness of mandated red-reflex eye screening faces a range of challenges. Most significantly, a red-reflex exam, even with dilating drops, enables examination only of a small portion of the central retina. Cancer arising from peripheral retina does not cause obvious white pupil consistently in photos or eye exams in the early stages. Correct performance of the red reflex test, and the child’s ability to tolerate dilating drops and co-operate with the exam also impact outcome of screening.
Many solutions have been proposed for early detection, in addition to mandated red reflex tests at birth and well child visits. These include Retcam imaging, Visual Evoked Potential (VEP) exams, publishing symptom information in official expectant mother packs, leafleting of communities, and media coverage.
There is no single answer to improving early detection. Multiple approaches are needed. Some are more sustainable and cost effective than others. Some will catch only certain presentations of eye cancer. Some require specific systems to exist before they can be implemented. Some need regional, national or global collaboration to be truly effective.
This session will explore the potential and limitations of different approaches to screening and early detection. We will consider practicalities of implementation, ability to measure impact, cost effectiveness and potential for long term sustainability with maximum reach. To be continued during the Awareness and Early Detection Breakout Session.
9.20am – 10:15am: Genetics | Brenda Gallie, SickKids Hospital, Toronto, Canada
Question: What do my / my child’s genetics results mean for risk and screening, current treatment, EUAs after treatment, and for adult life? What do we do if we can’t access genetic testing?
Session Lead:
Brenda Gallie, M.D.
Director of the Retinoblastoma Program, The Hospital for Sick Children (SickKids), Toronto, Canada; Professor, The University of Toronto, Toronto, Canada.
Medical Director, Impact Genetics; Co-Founder, WE C Hope.
Speakers:
- Hilary Racher PhD FCCMG DABMGG Scientific and Laboratory Director, Impact Genetics, Toronto, Canada.
- Melissa Mills MS, CGC, LGC, Genetic Counselor, Lucile Packard Children’s Hospital, Stanford, California, USA; retinoblastoma survivor.
Session Background: Retinoblastoma is caused by changes to the RB1 tumor suppressor gene or, rarely, MYCN oncogene. In Two-thirds of affected children, these changes happen only in the retinal cell that becomes a cancer. In one third of children, they are present in every cell throughout the body, and can be passed to the next generation.
Molecular genetic testing of blood and / or tumor sample (if the eye is surgically removed) can pinpoint changes that caused tumors to form, and even when they happened. This knowledge informs patient care, identifies at risk family members, and eliminates risk for infants who would otherwise require frequent invasive surveillance.
Retinoblastoma genetics are complicated, especially when a child has cancer in one eye. The different scenarios and what they mean for medical care can cause great confusion even amongst care providers. Molecular genetic testing is expensive and available at only a few places worldwide. Most families cannot access genetic testing, and struggle even to find someone who can clearly explain the risks to them in simple terms.
Genome technologies are now on the threshold of significantly reducing costs, removing barriers and leading the way to prevention of hereditary cancer. Real progress requires social and medical understanding of the vital need for each affected individual and family to know the risks for retinoblastoma and other cancers, for themselves and their relatives.
This session will unpack the complexities of RB1 genetics, examining each scenario and its screening, treatment, follow up care and life-long implications. We will also explore the opportunities for expanding genetic knowledge to families and survivors in developing countries, and emerging areas of retinoblastoma genetics research
10:15am – 10:30am: MORNING COFFEE BREAK
10:30am – 11:25am: Enucleation | Jonathan Kim, Children’s Hospital Los Angeles, USA
Question: How do doctors know when trying to save an eye is dangerous, and removing it is the only option? How do we best care for the socket throughout life?
Session Leaders:
Jonathan Kim, M.D.
Director of Retinoblastoma Program, Children’s Hospital Los Angeles, Los Angeles, Caifornia
Associate Professor of Clinical Ophthalmology, USC Roski Eye Institute, Los Angeles, California
Presentation: The Role of Enucleation in 2017 and Beyond
Stephen Haddad, B.C.O, B.A.D.O.
Director, Ocular Prosthetics, Inc., Los Angeles, California
Presentation with Greg Dootz: “Life with an Ocular Prosthesis: The Early Years and Beyond”
Session Participants:
Greg Dootz, A.A.S.
Ocularist, Kellogg Eye Center, University of Michigan Hospital, Ann Arbor, Michigan
Brenda Gallie, M.D.
Director of the Retinoblastoma Program, The Hospital for Sick Children (SickKids), Toronto, Canada; Professor, The University of Toronto, Toronto, Canada.
Medical Director, Impact Genetics; Co-Founder, WE C Hope.
Presentation: Simple Implants and Muscle Placement, and Immediate (Temporary) Prosthetic Eyes for Happy Children.
Session Background: As treatment advances lead to greater success in saving eyes, so the boundaries of safety can become blurred when considering which children may most benefit from these therapies. When cancer is advanced within the affected eye, removing the eye remains the best option for saving the child’s life. Clear consensus agreement on features that indicate high risk to life helps guide parent and physician decision-making, and optimal medical care for the individual child.
Different surgical techniques and implants are used during eye removal surgery, with varied outcomes for health of the eye socket and cosmetic appearance. Data is limited on incidence and management of complications in this population, particularly among adult survivors previously treated with radiotherapy.
This session will review features defined in the TNMH8 Retinoblastoma Staging and other staging modalities as indicators for enucleation, considering each in detail and its implications for the child. We will explore surgical techniques and artificial eye process that offer optimal outcome for child’s enucleated socket and lived experience. We will also consider existing evidence for lifelong socket care and management of complications, identify areas where more research is needed, and discuss how this can be achieved in our widely dispersed environment.
11:30am – 12:25pm: High risk features in RB | Patricia Chevez-Barrios, Houston Methodist Hospital, USA
Question: How do doctors and parents make the decision about adjuvant chemotherapy?
Session Lead:
Patricia Chevez-Barrios, M.D.
Ophthalmic Pathology, Houston Methodist Hospital/The Retinoblastoma Center of Houston
Adjunct Professor, Department of Ophthalmology, Baylor College of Medicine, Houston, Texas
Presentation: High Risk Features, Diagnosis and Reporting.
Speakers:
Dan S. Gombos MD FACS
Professor & Chief, Section of Ophthalmology, MD Anderson Cancer Center
Clinical Co-Director, The Retinoblastoma Center of Houston
Presentation: Patients with Probable High Risk Features by Clinical Presentation
François Doz, M.D.
Professor of Pediatric Oncology & Medical Director of Training, Institut Curie, Paris, France,
Professor of Paediatrics, University Paris Descartes, Paris, France
Presentation: Treatment Options in High Risk Patients – The Curie Institute Approach
Murali Chintagumpala, M.D.
Co-Director, Brain Tumor Program; Director, Solid Tumor Program; Co-Director, Retinoblastoma Program,Texas Children’s Hospital/The Retinoblastoma Center of Houston
Professor, Baylor College of Medicine, Houston, Texas
Presentation: Treatment Options in High Risk Patients – Children’s Oncology Group Approach
Session Background: Removing an eye offers the best chance to save the child’s life, but prompt pathological examination of the removed eye and optic nerve is essential to guide postoperative care. However, there is no international agreement on high risk features that indicate need for further treatment after surgery. In many developing countries, limited expertise in eye pathology results in failure to provide the crucial timely information doctors need to inform appropriate care for each child.
Delayed and incomplete reports and lack of standardized high risk features cause over and under treatment of children worldwide, and great stress and confusion to families. In developing countries, this also leads to suboptimal use of limited medical resources, and crushing financial burdens.
This session will debate contentious areas of pathology and explore the research options to inform an agreed standard guideline on high risk features. We will also explore opportunities to bring rapid pathology assessment and quality reporting to children in countries with limited resources and expertise worldwide.
12:30pm – 1:45pm: LUNCH
1:50pm – 2:45pm: Rb in Developing Countries | Lorna Renner, Korle Bu Teaching Hospital, Accra, Ghana
Question: What is the status of Rb in developing countries? I’ve been contacted by a family in a developing country whose child has Rb. What can I do to help them?
Session Lead:
Lorna Renner, M.D.
Associate Professor, Department of Child Health, University of Ghana School of Medicine, Accra, Ghana
Head of Paediaric Oncology Unit, Korle Bu Teaching Hospital, Accra, Ghana
Session Participants:
Carlos Rodriguez-Galindo, M.D.
Chair, Department of Global Pediatric Medicine, St. Jude Children’s Research Hospital, Memphis, Tennessee
Executive Vice President & Faculty Member, St. Jude’s Children’s Research Hospital, Memphis, Tennessee
Presentation: Resource Adapted Treatments and Treatment in LMICs
Arun Singh, M.D.
Director of Department of Ophthalmic Oncology, Cole Eye Institute at Cleveland Clinic, Cleveland, Ohio
Presentation: Global Burden of Retinoblastoma (epidemiology, incidence/mortality, factors)
Luiz F. Teixeira, M.D.
Ophthamologist, GRAACC, San Paolo, Brazil
Presentation: Early Diagnosis and Public Health Initiatives in Brazil
Session Background: 90% of children with retinoblastoma live in low and middle income countries. However, care is hindered by sparse published literature about how to effectively manage retinoblastoma in the resource limited setting, few professional development opportunities and low investment in initiatives building sustainable local capacity and evidence based care.
While life-saving eye removal surgery is available in most countries, children usually present with advanced disease that cannot be cured by surgery alone. This increases the child’s risk to develop metastatic disease (usually in the brain or bone marrow) and / or orbital relapse.
Many countries have capacity to save eyes, or life when there is limited cancer spread beyond the eye. However, lack of coordinated care places great burdens on families and health systems, while late diagnosis and high costs frequently render these specialist treatments useless or inaccessible. Lack of emotional support and funds leads to rapid loss of hope. Abandonment of therapy is the primary cause of treatment failure among curable children in developing countries.
Cure rates can be increased in resource limited countries by building public and health worker awareness, local capacity to promptly diagnose and manage retinoblastoma, and caring, practical family support.
Worldwide, families and medical professionals from low and middle income countries regularly seek international care offering alternatives to locally prescribed treatments. However, many children experience severely delayed treatment and limited follow up due to poor communication, financial burdens bureaucratic and logistical challenges and poor forward planning. For many children, the outcome is worse than might be achieved by locally available therapies and support of local clinicians. Best outcomes are achieved when close collaboration is established between home and overseas medical teams throughout planning, treatment and follow-up.
This session will explore the challenges and opportunities for retinoblastoma in resource limited countries. We will consider twinning partnerships and links, examine potential for multi-center research, and discuss global collaboration to rapidly develop specialist care in under-served regions of the world. We will explore key challenges affecting outcomes for children seeking care in another country, and discuss ways in which families and medical professionals can best help to ensure optimal outcome.
2:50pm – 3:45pm: Adult Survivors | Dan Gombos, MD Anderson Cancer Center, Houston, USA
Question: What recommendations do you have for long term follow up care and screening in RB1 mutation carriers and children treated with chemotherapy / radiotherapy? How can you help us educate our primary doctors so they take us seriously, and what can we do if we have no access to a survivor / follow-up program?
Session Lead:
Dan S. Gombos MD FACS
Professor & Chief, Section of Ophthalmology, MD Anderson Cancer Center
Clinical Co-Director, The Retinoblastoma Center of Houston
Presentation: The Adult with Distant History of Retinoblastoma: Practical Tips for Your Primary Care Provider
Session Participants:
Katherine Paton, M.D., FRCSC
Clinical Professor of Ophthalmology, The University of British Colombia, Vancouver General Hospital; British Colombia Children’s Hospital, Vancouver, Canada
Head, Ocular Oncology & Director of Diagnostic Ophthalmic Ultrasound Imaging, University of British Columbia, Vancouver, Canada
Presentation: Brain Tumors: Who, When and How to Screen
David R. Freyer, D.O., M.S.
Director, Survivorship & Supportive Care Program, Children’s Center for Cancer and Blood Diseases, Children’s Hospital Los Angeles, Los Angeles, California
Professor of Clinical Pediatrics and Medicine, Keck School of Medicine, University of Southern California, Los Angeles, California
Presentation: Cancer Survivorship Clinic: Who Should be Referred and Why?
Ruth Kleinerman, M.P.H, Ph.D.
Epidemiologist, National Cancer Institute, NIH, Rockville, Maryland
Deputy Branch Chief, Radiation Epidemiology Branch, NCI, NIH, Rockville, Maryland
Presentation: Secondary Tumors in the RB Population: Which Tumors and When?
Session Background: Carriers of a constitutional RB1 mutation and children who received chemotherapy or radiotherapy have increased risk of developing second primary cancers and other serious health issues. Understanding who is at risk, what to look out for and what to do if concerned about unexplained symptoms is very important to life-long wellbeing.
There is no agreement on effective or appropriate life-long screening for at-risk individuals. Specialist follow-up care into adulthood is not widely available. Confusion among survivors, their parents and primary physicians impedes early intervention when new medical concerns arise. When they do not have solid information and ongoing follow-up care, those at risk are less able to be good advocates for themselves and their children.
This session will review the long-term health risks associated with retinoblastoma and its treatment. We will discuss approaches to long term follow up care and screening. We will explore ways in which our global community can assist parents and adults to effectively advocate for their ongoing health care needs.
AFTERNOON COFFEE WILL BE TAKEN DURING BREAKOUT SESSIONS
3:45pm – 4:15pm: Breakout Session - Treatment
Delegates will be invited to join one of five discussion groups. Drinks and food will be served at each working table.
Working groups will explore
- Informed Consent: How do we inform parents about the risks of treatments for saving TNM cT2b/cT3 (Group D and E) eyes? What can we do to help families make the best decisions for their child?
- Toxicity: How do we balance progress of new treatment development with patient safety?
- MRI Findings: How to do we interpret findings, and what is the appropriate follow up plan in each scenario?
- Engaging Parents: How do we create an inclusive care team to achieve best quality of life and outcomes for the child and entire family?
- Technologies to Advance Care: What technologies are emerging and how can we harness them effectively to improve medical care, collaboration and research?
- Understanding Past Treatment: How can adult survivors learn more about their treatment history when their parents’ recollection is patchy?
4:15pm – 4:45pm: Breakout Session - Beyond Treatment
Delegates will be invited to join one of five discussion groups. Drinks and food will be served at each working table.
Working groups will explore
- EUA Schedule: How do we effectively follow children beyond active treatment, and when and how do we transition to office exams?
- Psychosocial Wellbeing: How can we address the non-medical needs of children and families to improve the treatment and post-treatment experience, and prevent / reduce life-long negative impacts?
- PTSD in Rb Survivors, Parents/Carers and Siblings: How can we effectively study the short, medium and long-term impacts of retinoblastoma, its treatments and life-long burdens, to ensure we provide meaningful interventions at every stage of the journey?
- Survivor Care: What are the best follow-up protocols for different patient groups, and what does comprehensive survivorship care entail? How do we transition children effectively to adult care? How can we ensure adult survivors are aware of their risks / care needs, and that they have access to appropriate care?
- Guidance for Physicians: Can we produce, review & edit a document for parents & adult survivors to share with physicians (general ophthalmologists, oncologists and primary physicians) following Rb survivors, detailing the different scenarios of Rb diagnosis, genetics, treatment & second cancer risks, with specific reference to radiation exposure? Can we identify a process for global endorsement & circulation?
- Data Collection: How do we gather data about the health events of adult survivors who have transitioned to adult care widely dispersed away from the original treatment facility? How can we ensure the valuable knowledge of their life experience is not lost and informs future patient care?
4:45pm – 5:00pm: Review of the Day
Jesse Berry, M.D.
Scientific Program Chair, One Retinoblastoma World 2017.
Associate Director of Ocular Oncology, Children’s Hospital Los Angeles,
Assistant Professor of Ophthamology, USC Roski Eye Institute, Los Angeles, California.
Helen Dimaras
Director of Global Eye Health Research, Department of Ophthalmology & Vision Sciences, The Hospital for Sick Children, Toronto, Canada.
Assistant Professor, The University of Toronto, Toronto, Canada
* * * WEDNESDAY OCTOBER 11TH, 2017 * * *
8:00am – 09:05am: Breakfast & Networking
9:10am – 9:20am: Welcome and Introduction to the Day’s Program
Marissa Gonzalez, Retinoblastoma Survivor, President and Founding Director, WE C Hope USA.
Jesse Berry, Associate Director of Ocular Oncology, Children’s Hospital Los Angeles, USA; Program Chair, One Retinoblastoma World 2017.
9:20am – 10:15am: Diagnosis | Ashwin Mallipatna, Women‘s & Children’s Hospital, Adelaide, Australia
Session Leads: Ashwin Mallipatna, Pediatric Ophthalmologist, Women’s and Children’s Hospital, Adelaide, Australia / Helen Dimaras, Director of Global Eye Health Research, Department of Ophthalmology & Vision Sciences, The Hospital for Sick Children, Toronto, Canada..
Speaker: Brenda Gallie, Pediatric Ophthalmologist, Professor of Medical Biophysics & Molecular Genetics & Director of the Retinoblastoma Program, The Hospital for Sick Children, Toronto, Canada; Medical Director, Impact Genetics; Co-Founder, WE C Hope.
Question: What are the different staging and classification systems, and what do the different numbers / letters mean? What are the implications for treatment and survival?
Retinoblastoma is staged to predict how effective different treatments are to save the child’s life. Each eye is classified to indicate the likelihood that different treatments can safely save the eye, and give the best vision. When both eyes are affected, each eye is classified independently. Stage for a child with cancer in both eyes is based on the worst affected eye, as an indicator of risk to the child’s life.
Two classifications are widely used. They differ significantly, impeding interpretation of research results and causing confusion among parents and clinicians. The TNM Staging System now also incorporates classification of retinoblastoma. Several alternatives to the international staging system also cause confusion.
This session will review the different staging and classification systems, what each level means and how it impacts decision making for the child’s eye and holistic care. We will also examine how uniform staging and classification aids research and development of evidence based care.
10:15am – 10:30am: MORNING COFFEE BREAK
10:30am – 11:25am: Treatment & Consent | Brenda Gallie, Hospital for Sick Children, Toronto, Canada.
Session Lead: Brenda Gallie, Pediatric Ophthalmologist, Professor of Medical Biophysics & Molecular Genetics & Director of the Retinoblastoma Program, The Hospital for Sick Children, Toronto, Canada; Medical Director, Impact Genetics; Co-Founder, WE C Hope.
Speakers:
- Brian Marr, Director of Ophthalmic Oncology, NewYork-Presbyterian/Columbia University Medical Center, New York City, USA.
- Bhavana Chawla, Professor of Ophthalmology, All India Institute Of Medical Sciences, New Delhi Delhi, India.
Question: What are the different treatment options, when are they best used, and what are the benefits and risks of each? What can I do to make the best decisions for my child?
In order of priority, therapy aims to protect or save a child’s life, control symptoms when cure is not possible, preserve vision and preserve cosmetic appearance. A range of treatments are available, depending on the size, number and location of tumors in each eye, whether one or both eyes are involved, potential for saving vision, availability of follow up care, and general health and wellbeing of the child.
Treatments include laser, cryotherapy, systemic chemotherapy, various methods of delivering chemotherapy directly to the eye, radiotherapy, radioactive plaque, and surgical removal of the eye. Each has benefits and risks, and particular indications for use in caring for the child with eye cancer. Effective decision making relies on a fully informed consent process, and support for the family as they make difficult choices for their child’s future.
In developed countries, the primary focus is saving sight, but many families wrestle with a confusing array of therapies offered at widely scattered centers. This distress is compounded when surgical removal of the affected eye is recommended. In developing countries, families often struggle to reach specialist care, or delay treatment while looking for alternatives to recommended eye-removal surgery.
This session will explore the various established retinoblastoma treatments and emerging therapies, and important considerations for each. We will discuss the informed consent process and how we can best help navigate and support parents through the decision making and treatment planning as strong advocates for their child.
11:30am – 12:25pm: Parent Advocate | Kaitlyn Hougham, SickKids Hospital, Toronto, Canada
Session Lead: Kaitlyn Hougham, Research Coordinator, Patient Engagement Strategy, The Hospital for Sick Children, Toronto, Canada.
Speakers:
- Sarah Hancock, Parent
- Sarah Green RN, Pediatric Nurse Practitioner, Division of Hematology-Oncology, Children’s Hospital Los Angeles, USA.
- Amanda Brody MS, Certified Child Life Specialist, St Jude Children’s Research Hospital, Memphis, USA.
Question: How can I best prepare / support / advocate for my child during tests and treatment to protect their wellbeing?
Cancer treatment can overwhelm a child’s natural ability to cope. This can delay healing and normal development, with lasting negative effects on physical and mental health. When parents do not have clear and accurate information or appropriate support, they are unable to make fully informed decisions about their child’s medical care. They cannot adequately prepare their child for medical experiences, provide optimal support or feel confident and calm as the child’s primary advocate.
Research demonstrates that healthy spirits in both children and parents accelerate recovery and decrease risk of noncompliance with recommended therapy. These benefits collectively reduce stress on the affected child, parents, siblings, and health care system. Engaging families in the development of clinical services increases advocacy and innovation to advance care. However, child-friendly medical care and family support specific to retinoblastoma is limited worldwide, and in many situations not actively promoted by the clinicians. This leads to sub-optimal, even tragic, outcomes for too many precious children and families.
This session will explore ways in which parents can help their child manage stress during their eye cancer journey. We will discuss integrated medical care solutions to protect and promote quality of life. We will also consider how parents and medical professionals can work together to from a strong holistic team advocating for the child’s complete wellbeing.
12:30pm – 1:45pm: LUNCH
1:50pm – 2:45pm: Psychosocial outcomes | Marissa Gonzalez, WE C Hope
Session Lead: Marissa Gonzalez, Retinoblastoma Survivor, President and Founding Director, WE C Hope USA.
Speakers:
- Melissa Mills MS, CGC, LGC, Genetic Counselor, Lucile Packard Children’s Hospital, Stanford, California, USA; retinoblastoma survivor.
- Len Burns, LMFT, Santa Clara, California; retinoblastoma survivor.
Question: A retinoblastoma generates unique medical and psychosocial needs as developmental milestones throughout a person’s lifetime are simultaneously impacted. What research is currently being done into psychosocial impacts and PTSD in diagnosed children, parents and adult survivors throughout their life, and how can we be involved to share our experience?
Raising children can be challenging at the best of times. The complication of a child’s life-threatening illness places increased pressure and demands on parenting skills and mutilates the familiar rhythm of family life. This can be a bewildering experience, drenched in overwhelming emotions.
The needs of the child with cancer can change rapidly, as may the needs of individual parents, siblings and close relatives. Children have fewer coping skills than adults, and need extra support to help them through traumatic experience and intense, unfamiliar emotions. Parents describe the experience of their child’s cancer as like riding a terrifying roller coaster, with no ability to see the way ahead and no emergency stop cord. Effective self-care during this time is very important. Grandparents experience deep emotions in response to retinoblastoma. Often these are complicated by genetic implications of their grandchild’s cancer.
Many parents and grandparents caring for a child with cancer experience depression, yet most fail to recognize its destructive power. It saps the energy needed for effective self-care and care of the child / whole family, quickly destroying self-confidence and hope. Seeking support early boosts quality of life for the individual and their entire family.
The ghost of cancer walks with many survivors and families long after treatment ends. Emotions, impaired vision and other effects of treatment, life-long health risks and adapting to meet the challenges of the world can be hard. Coping requires knowledge, understanding, flexibility and patience. Through healing, through loss.
Often, parents cope well during therapy, but suffer badly when it ends. Intense anxiety may erupt long after the crisis of treatment, attacking when it is least expected. Similarly, children may appear to cope very well with their medical journey, but struggle significantly in adolescent and / or adult life. Post-traumatic stress disorder (PTSD) can develop after a life-crisis like cancer. Strong support from family and friends, and open, honest relationships with the child’s medical team can reduce risk or lessen impact.
This session will consider the small published body of evidence on outcomes for survivors of retinoblastoma and their relatives. We will explore the findings alongside the experiences of survivors, parents and children participating in the meeting. We will discuss how future studies could be developed to effectively capture accurate outcome data, and how parents, survivors and children still in treatment can be involved in progressive research.
2:50pm – 3:45pm: Research | Jesse Berry, Ocular Oncologist, Children’s Hospital Los Angeles, USA
Session Lead: Jesse Berry, Associate Director of Ocular Oncology, Children’s Hospital Los Angeles, USA; Program Chair, One Retinoblastoma World 2017.
Speakers:
- Mary Beth Aronow, Assistant Professor of Ophthalmology, Johns Hopkins Wilmer Eye Institute, Baltimore, USA.
- Zelia Correa, Ophthalmologist, Division of Pediatric Ophthalmology & Ocular Oncology, Cincinnati Children’s Hospital, Cincinnati USA.
- Helen Dimaras, Director of Global Eye Health Research, Department of Ophthalmology & Vision Sciences, The Hospital for Sick Children, Toronto, Canada..
Question: How does clinical research work and what do I need to know about it in relation to my child’s care?
Clinical trials are the gold standard of childhood cancer care. They systematically test treatments to guide development of the most effective therapies with minimum side effects. This is usually done by comparing a standard treatment to a new therapy or a modified version of the standard therapy. When medical and supportive care is based on clear scientific evidence, a child’s chance of survival with minimal negative effect dramatically improves.
The most important question for retinoblastoma research is: “Is this treatment more or less effective than current therapies, with more or fewer side effects?”
Approximately 8,000 children are diagnosed with retinoblastoma worldwide each year. Children are widely distributed around the world, with no regional differences in incidence. Only 10% of affected children live in developed countries, where most clinical research takes place and the main focus is saving sight. 90% of affected children live in developing countries, where clinical research is difficult due to limited resources. The priority for most of these children is life-saving treatment and palliative care. This makes it difficult to conduct rigorous clinical trials that effectively answer the question.
Variations in “standard” treatment are common. For example, carboplatin, etoposide and vincristine is a globally recognized chemotherapy combination for retinoblastoma. However, there is no internationally agreed-to regimen for their use. Factors that differ between centers around the world include:
- Dosage (including the way it is calculated)
- Timing and delivery method of medications
- Length of rest period (time between each cycle)
- Number of cycles,
- Supportive medications (drug, dose, timing, given to prevent side effects or treat side effects only after they appear)
- Eye examination and focal therapy schedule
- Additional therapies (chemotherapy injections, radiation etc.)
Numerous single center studies are investigating promising therapies. However, many children receiving a treatment under investigation have already received different treatments at that center or elsewhere. These differing treatment histories make it difficult to evaluate toxicity and extract meaningful conclusions about the treatment’s efficiency.
Small numbers of children enrolled in individual research studies prevent randomization. Accurate comparison of outcome from those many regimens and studies is impossible. Without standard therapy comparison, investigators cannot fully evaluate risk of an experimental therapy, or demonstrate efficacy in treating a particular stage of disease.
Researchers are required by law to obtain informed consent from patients or their legal guardians before giving treatment within a clinical trial. Before effective consent can be given to enroll a child in a clinical trial, doctors and researchers must give parents sufficient information in a way they can understand, so they can make informed choices.
This session will review the process of clinical research in the context of retinoblastoma care. We will explore the potential of multicenter clinical trials to aid evidence based care. We will discuss what information needs to be shared to enable fully informed consent, what parents can do to determine whether they have received all necessary information, and what they can safely do if they are concerned or unsure about treatment decisions.
AFTERNOON COFFEE TAKEN DURING BREAKOUTS
3:45pm – 4:15pm: Breakout Session: Follow-up from Dublin
Delegates will be invited to join one of five discussion groups. Drinks and food will be served at each working table.
4:15pm – 4:45pm: Group Discussion: Future Goals & Actions
Jesse Berry (CHLA) & Helen Dimaras (SickKids)
4:45pm – 5:00pm: Review of One Rb World and Close
Marissa Gonzalez, Retinoblastoma Survivor, President and Founding Director, WE C Hope USA.
Jesse Berry, Associate Director of Ocular Oncology, Children’s Hospital Los Angeles, USA; Program Chair, One Retinoblastoma World 2017.