Helen Pearson and Katie Johnson, co-chairs of the National Neuroblastoma Nursing Group (NNNG), tell us more about how they have developed a range of animation videos to help parents make decisions about their child’s treatment as part of a neuroblastoma clinical trial.
When a child is diagnosed with neuroblastoma, cells from the child’s tumour are assessed and categorised bydoctors using a neuroblastoma staging system so that they can see if the cancer cells are low-, intermediate- or high-risk. By doing this, doctors can decide on the right treatment for the child depending on the stage of the tumour.
Around 50% of children diagnosed with neuroblastoma are classified as having high-risk disease. This means that these children will usually need intensive treatment from the start because their neuroblastoma cells are highly cancerous and will therefore behave more aggressively in the body. Most children will need a combination of different types of treatment such as surgery, chemotherapy (include highdose chemotherapy), radiotherapy and immunotherapy.
International neuroblastoma clinical trial now open in the UK
A new clinical trial called HRNBL-2 (high-risk neuroblastoma 2 clinical trial) has recently opened and is recruiting children with high-risk neuroblastoma across the UK and Europe. Its aim is to compare different chemotherapy and radiotherapy treatments to find out which is most effective and/or has the fewest side effects.
The best way of testing this is through a randomised clinical trial, where patients are placed in different treatment groups so that the results can be compared. If a child is eligible for the trial, parents will be asked initially if they would like to take part in the study, and then at the start of each treatment phase, they’ll be asked whether they agree to treatment being randomised.
This clinical trial is anticipated to be open for five years and currently six out of 27 countries are open to recruitment. The trial first opened in France in 2020 and has been open in the UK since August 2021. Within the UK, three principle treatment centres are open with another 17 due to open soon.
Creating an animation to support parents
The National Neuroblastoma Nursing Group (NNNG) is affiliated with CCLG in partnership with Solving Kids Cancer (SKC). The aim of the NNNG is to support nurses by sharing knowledge and experience in caring for children diagnosed with neuroblastoma, offering a supportive network for advice and information, and working collaboratively to develop national guidelines and information for children and their families to enhance the care and experience they receive.
An animation project was created in response to the HRNBL-2 clinical trial to support parent understanding of the many different treatment randomisations. We wanted to offer a different approach to how we give information and help inform parents about this complex clinical trial.
The idea for using visual animation came from a parent at the International Society Paediatric Oncology (SIOP) congress in 2019. Zohar Shalev, a mother in Israel whose daughter had been treated for leukaemia, had illustrated the treatment protocol to help explain to children and their families how treatment is given and what it involves.
Members of the NNNG who saw Zohar’s presentation felt visual information for parents could also support treatment protocols, such as the HRNBL-2 clinical trial. An animation explaining the different treatment randomisations was suggested to support information giving and parent decision making for this clinical trial.
How we involved parents
As a starting point, scripts were written for each treatment component within the clinical trial, giving clear, easy-toread content without jargon. Each script had information about the treatment, an overview of potential side effects and key points for parents to consider. Scripts were no longer than 350 words giving approximately 2-3 minutes for each animation.
The scripts were reviewed by parents as part of the Solving Kids Cancer Parent Involvement Forum and they gave valuable feedback for us to work from. Parents suggested having written captions at the bottom of the screen to help with accessibility, and short videos for each treatment component rather than one full video, acknowledging that some parents don’t want to look too far ahead.
From this meeting, one parent joined the core nursing group who worked with the animation design company to develop the videos. During production, it became clear that we needed to add more information in the introduction video to define what key terms mean such as 'clinical trial', 'randomisation', 'standard of care' and 'consent'. We also decided to develop a video for the end of treatment knowing that this can be an anxious time for parents.
When and where will the animations be accessible?
The videos will be completed in September 2022 and then reviewed by parents before being submitted for ethical approval to form part of the HRNBL-2 trial. There are eight videos that will help to explain each element of the trial:
1) Introduction to high-risk neuroblastoma
2) Induction chemotherapy
3) Stem cell harvest
4) Surgery
5) Consolidation chemotherapy
6) Radiotherapy
7) Maintenance therapy
8) End of treatment
The videos will be accessible to all parents via the University of Birmingham Cancer Research Clinical Trials Unit’s website, Neuroblastoma animation SHARE SAVE Neuroblastoma animation SHARE SAVE while the website link will be added to the relevant parent information sheets given to parents at the time of discussing each treatment component. Information on the videos will also be available via the CCLG and SKC social media platforms.
This animation project was supported by an unrestricted educational grant from EUSA Pharma.
For more information, please contact helenpearson1@nhs.net
What parents had to say
Information is needed in different formats and manageable chunks to help parents absorb and understand at a time of great uncertainty. These animations will be a great aid to explain the clinical trial to support parent decision making.
There are many incredibly complicated clinical steps which are made even more difficult to understand while feeling upset and distressed. Anything that makes that time a little easier for future families feels incredibly important.
What is Neuroblastoma?
• Neuroblastoma is the second most common solid tumour in children
• Around 100 children in the UK are diagnosed per year
• Usually affects younger children under five years old
• It can happen anywhere in the body
• It usually starts in the abdomen, especially the adrenal glands on top of the kidneys or the nerve tissue around the spine and pelvis
• It is an ‘embryonal tumour’ which means it is a type of cancer that develops from cells left behind from a baby’s development in the womb
From Contact magazine issue 96 - Autumn 2022
