One Retinoblastoma World, Dublin 2016 – Day 2

Tuesday November 22, 2016 | Abby White, WE C Hope CEO

Common Sense Primary Treatment, Retinoblastoma in Developing Countries, Innovations for Global Care, Pathway to Progress.

Dublin hosted the 3rd One Retinoblastoma World meeting on 17 – 18 October, just before the 48th Annual Congress of the International Society of Paediatric Oncology (SIOP).  On day 1, we discussed survivorship and life-long care, building evidence and understanding family and survivor experiences to improve care.  Read about the Day 1 sessions here.

Common Sense Primary Treatment

Day 2 began with intensive focus on emerging treatments.  They offer new hope of saving eyes, but we are often challenged to know the best decision when the child’s cancer is advanced and/or affecting only one eye.

Laurence Desjardins, ophthalmologist and director of the retinoblastoma program at Institut Curie, Paris, chaired a session defining pros and cons for child and eye.  She highlighted the need to think of the child holistically, weighing the potential benefits of eye-salvage treatment against the risks and psychosocial costs to the whole child and to their family.

Francis Munier, ophthalmologist and director of the retinoblastoma program at Jules Gonin Eye Hospital, Lausanne, Switzerland, compared effectiveness of intra-arterial chemotherapy (IAC) and intravenous chemotherapy (IVC) in treating unilateral retinoblastoma.  Experience strongly shows that IAC has a role to play in saving the eyes of some children while minimizing side effects of traditional therapies.  However, more careful research is needed to deepen our understanding of the most effective protocols, benefits, and risks, and to clearly identify the scenarios in which children will benefit with the least risk.

Jesse Berry, retinoblastoma specialist and Associate Director of Ocular Oncology, Children’s Hospital LA, CA, USA, illustrated how this path of eye salvage is also a high-risk venture for some children.  She shared the story of a patient travelled to another center for IAC treatment, whose cancer relapsed outside the eye during follow up care.  The child is now doing very well after intensive therapy.  Dr. Berry highlighted the need for common sense in research, standard-setting, decision-making and honest discussion with parents.  She asserted that advances must be made available appropriately to children who can safely benefit, while preventing cancer spread to the orbit, brain, bone marrow or other parts of the body in high risk children.

Meredith Lettich of Calgary, Alberta, Canada, shared her experience as a mother, navigating her daughter through diagnosis and treatment in the USA and Canada.  With great poise and courage, she demonstrated that even with the knowledge of high risk pathology after eye removal surgery, and the experience of intensive life-saving chemotherapy, parents wrestle with the question of “could we have said no?”

Our challenge as advocates for the retinoblastoma community is to understand and respect that experience.  From there, to invest in research that helps answer the questions families currently cannot answer, to advocate fully informed consent, and find ways to compassionately help parents make the best choices for complete wellbeing of their child and entire family.

Francis Munier

Francis Munier, Jesse Berry, Meredith Lettich

Retinoblastoma in Developing Countries

90% of children with retinoblastoma live in developing countries, and survival in these countries varies widely.  Where advanced retinoblastoma programs have developed through twinning partnerships with developed countries, survival among children treated at those centres now ranges 70-90%.  In many countries however, specialist care is virtually non-existent, and survival in most of these countries barely reaches 10-30%.

Lorna Renner, director of the paediatric oncology program at Korle Bu Teaching Hospital in Accra, Ghana, chaired a session exploring care in developing countries.   After presenting the Ghanaian experience, she introduced perspectives from Russia, Mexico, Mali, Kenya and Jordan.

Tatiana UshaKova, paediatric oncologist at N.N. Blokhin Cancer Research Center, Moscow, discussed the emergence of retinoblastoma treatment in Moscow over the last 40 years, from basic provision to comprehensive centre and progress to collaborative research involving three institutions.  She noted the vital importance of multidisciplinary care and training at a central care site, collaboration with dedicated local charities and researchers around the world, in developing successful comprehensive retinoblastoma care.

Marco Ramirez, ophthalmologist and director of the retinoblastoma program at Hospital Infantil de Mexico Federico Gomez, Mexico City, explored the social and demographic factors affecting outcomes.  Mexico is home to one of the world’s wealthiest citizens, but 50% of the population still live on just $4 per day.  In some cities, up-to 90% of residents survive on $1.25 per day.

Even in a country with a rapidly growing economy, survival continues to be hampered by delayed diagnosis, inconsistent access to care and limitations of therapy when cancer is advanced at diagnosis, particularly among the most impoverished communities.  However, hope is rising in Mexico City as more children are cured each year, thanks to comprehensive care.  Introducing Tomas (retionblastomas), a soft toy with removable eye, has also helped children and their families adjust to living well with an artificial eye.

Jayne Kamau spoke about the development and integration of child life at Moi Teaching and Referral Hospital in Eldoret, Kenya, and the value of child life supports in caring for children with retinoblastoma.  Jayne is the first Certified Child Life Specialist to train and qualify in Africa, thanks to WE C Hope.

Laurence Desjardins of Curie Institut in Paris, described the experience of her team helping to develop retinoblastoma care within the My Child Matters twinning program.  Funded by the International Union of Cancer Control (UICC), the program builds up paediatric oncology care through twinning between Curie and five hospitals in Francophone Africa – Bamako (Mali), Lubumbashi (DR Congo), Abidjan (Ivory Coast), Dakar (Senegal) and Antananarivo (Madagascar).

The Curie team assist with training and capacity building of the local team (including provision of artificial eyes), provision of equipment, database development, family funding for travel and some treatment.  Only curable children are included in the program due to the very limited funds available.

Yacoub Yousef of King Hussein Cancer Center, Amman, reflected on the experience of establishing Jordan’s comprehensive retinoblastoma service, through twinning partnership with St Jude Children’s Research Hospital.  He shared the challenges of delivering quality care to Jordan’s children while also responding to the needs of many children from neighbouring countries, including refugees – a situation many centres encounter as their expertise develops in regions devoid of specialist care.

We considered the challenges and positive impacts for everyone of working with a developing program despite very limited resources, and the need for more support to extend provision of support and access to optimal care.

Jayne Kamau

Lorna Renner, Marco Ramirez and Jayne Kamau.

Innovations for Global Care for Retinoblastoma

Our presentation-led sessions drew to a close with a focus on innovations for global retinoblastoma care, chaired by Caitriona Kirwan, paediatric ophthalmologist with Dublin’s retinoblastoma team.   Yushuang Xiao of Kunming Children’s Hospital, China, described a multicentre collaborative model for retinoblastoma, extending expertise beyond one hospital and city to bring optimal care as close to home as possible.  This has dramatically reduced burdens for families, while building up expertise around the country.

Brenda Gallie, director of the retinoblastoma program at SickKids, Toronto, discussed the importance of gathering point-of-care data to track and optimize care.  She discussed updates to the newly published TNM 8 classification for retinoblastoma, which now includes coding for heredity (TNMH).  We’ll share a separate blog about this soon, so everyone is up-to-date with the changes.

Sarah Outwater, bilateral Rb survivor and member of the Board of Directors of WE C Hope USA, spoke on plans for development of a comprehensive app to improve the child, parent and survivor care experience.  Sadly, life-long health challenges of retinoblastoma prevented Sarah from joining us in Dublin, but IOS video enabled her to join us from across the pond, and we all wished her a speedy return to good health as we considered various app innovations.

Guillermo Chantada of Hospital Sant Joan de Déu, Barcelona, concluded with a presentation on the development of the European Retinoblastoma Group (EURbG) and collaborative tools that enhance patient care, research and awareness raising across the continent.  The EURbG is an excellent model of how treatment centres and allied charities in countries across one geographical region or an entire continent can link up to pool data, enhance research and improve care in all participating countries and beyond.

Creating a Path to Progress

During our final session, the delegation broke into five working groups, exploring many of the discussion topics and suggestions in more depth.  From awareness, advocacy and integrated family support to advancing treatment, psychosocial care and technologies for global innovation.  Groups identified progress made and tasks from 2012 and 2014 not yet achieved, priorities going forward and tasks to continue or begin work on. Reporting back in 2017.

When diagnosed early and treated effectively, retinoblastoma is highly curable.  No child should die, or suffer avoidable blindness, from this cancer.

The One Retinoblastoma World community is passionately committed to improving care, cure and quality of life for all children, survivors and families.  Together, we can effectively research, understand, respond to and advocate for the needs of all who are affected by retinoblastoma.

We will work diligently through the next twelve months, and we look forward to meeting again in Washington D.C., USA in October 2017, immediately before the 49th World Congress of the International Society of Paediatric Oncology.

We hope you will join us then for what promises to be a very engaging holistic program for parents, survivors and medical professionals alike.   We are planning a full program for parents and survivors, with provision for younger members of our retinoblastoma community, and good networking opportunity between parents, survivors and medical professionals.

So please save the date!

One Retinoblastoma World: Monday 9 – Wednesday 11 October, 2017.

International Society of Paediatric Oncology World Congress: Thursday 12 – Sunday 15 October, 2017.

Location: Washington D.C., USA.

We look forward to greeting you there, and we’ll update as details become available through the new year.

Lincoln Memorial

Read about the International Society of Paediatric Oncology World Congress, which this year welcomed 2,500+ medical professionals, parents and survivors from nearly every country in the world!  Find out how our global retinoblastoma community ensured children with eye cancer, survivors and their families had a voice at the most important global conference in the annual childhood cancer calendar.

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