By Shaarna Shanmugavadivel, Paediatric Register, Nottingham, UK with an interest in paediatric emergency medicine
I am not a paediatric oncologist, yet, I am constantly in awe of the paediatric oncology community, and the inspirational work they do for children diagnosed with cancer. In 2012, I worked as paediatric junior doctor on the oncology ward at the Queen’s Medical Centre in Nottingham, UK with Professor David Walker, Professor Richard Grundy and Dr Martin Hewitt, Dr Sophie Wilne and Dr Simone Stokely. Whilst working on the ward for a year, I met numerous families starting their treatment journey after a diagnosis of cancer. I heard countless stories of repeated visits to healthcare professionals with non-specific symptoms. Invariably this led to long journeys to eventual diagnosis.
Early diagnosis is key
As a paediatrician with a career aspiration in emergency medicine, it made me reflect on (and panic about!!) the patients that I had seen in the emergency department, that had presented with non-specific symptoms. When a clinician sees a child with symptoms, they come up with a list of potential diagnoses (otherwise known as differential diagnoses) based on the information they have available to them. I realised that I had not even contemplated cancer as a potential differential diagnosis in these patients.
Yet, in the UK, the initial investigation of suspected childhood cancer lies predominantly with general practice, the emergency department or general paediatrics, although some children may be referred to sub-specialties such as ENT or psychiatry. Children will only meet a paediatric oncologist once there is an initial diagnosis of cancer from a blood test or imaging result. Therefore, education of those outside of the paediatric oncology world about childhood cancer, and how it can present is so crucial, especially as early diagnosis is key to optimising outcomes for these children. Improving early diagnosis is one of SIOP’s strategic goals.
A few years later, an advert for the HeadSmart fellow job, to work on the national HeadSmart, brain tumour awareness campaign came out, and my journey into early diagnosis of childhood cancers began. Fast forward 8 years and I am midway through a PhD in childhood cancer diagnosis that will culminate in Child Cancer Smart, an awareness campaign, led by the Children’s Cancer and Leukaemia Group (CCLG). You may otherwise have seen me dancing on TikTok with the infamous Bob Phillips and wonderful Angela Polanco to raise money for the CCLG. Whilst the imposter syndrome is strong, I have never experienced a kinder or more welcoming specialty, both nationally and globally, and for that feel incredibly grateful. In particular, to Professor Kathy Pritchard-Jones, for her kindness and unwavering support for our early diagnosis work!
Professor David Walker and team, at the Children’s Brain Tumour Research Centre (Nottingham, UK) developed the brain tumour guideline that aids assessment and investigation of children with suspected brain tumours, which was accredited by the National Institute for Health and Care Excellence (NICE). In the UK, NICE provides guidance and sets quality standards, making recommendations to the NHS to improve health and treat ill health. The guideline was revised and re-published in February 2017. It can be found on the HeadSmart website (www.headsmart.org.uk).
The HeadSmart campaign, a
national public and professional awareness campaign, was launched in 2011 to
amplify the NICE-accredited guideline. It was a collaboration between the
Children’s Brain Tumour Research Centre (CBTRC) at the University of Nottingham
and the Brain Tumour Charity (formally known as the Samantha Dickson Trust), following
the death of Samantha who experienced a long delay to her diagnosis.
Early diagnosis materials
The guideline was translated into awareness materials for the public and professionals. The most popular by far has been the symptom card (Figure 1). The symptoms were taken from a large systematic review(1) of more than 4000 children internationally. It provides an age-stratified list and clear instructions for what to do if 1 or more symptoms are present. This empowered parents to seek medical advice, but likewise provided a quick and easy checklist for healthcare professionals to use in their consultations.
Other materials for healthcare professionals are also available. These include a quick reference guide of the guideline and a specialty poster.
Figure 2: Quick reference guide postersummarising the guideline
Figure 3: Sub-specialty poster
Big reduction in time to diagnosis
Data on the Total Diagnostic
Interval or TDI (defined as the time from first symptom to diagnosis), has been
collected nationally from all 18 Children Cancer Centres in the UK between 2011
and 2016, in order to monitor change. The median total diagnostic interval in
the UK prior to publication of the guideline was 14.4 weeks - an average of 3.5
months to be diagnosed with a brain tumour! After the HeadSmart campaign had
been running for 4 years, the average of 3.5 months was reduced to 6.5 weeks in
2015(2, 3) as seen in the figure below.
The system interval is defined as the time from seeing a
healthcare professional for the first time, to diagnosis. One of the greatest
achievements of this project is that this interval went from a median of 3.3 weeks
to just 1 week!
Where next?
When the WHO Global Initiative for Childhood Cancer (GICC) was launched, we were pleased that it underlined the importance of accelerating diagnosis for children with cancer globally. We had an opportunity to discuss the HeadSmart project with the Director General of WHO Dr Tedros Ghebreyesus when he visited the University of Nottingham in 2019. He liked the evidence base and simplicity of the messaging and felt it was adaptable across communities and easy to scale up to have greater impact.
Since then, it has been an absolute pleasure to witness other nations adapting the HeadSmart project, either, fully as in Jordan where the materials are available in Arabic (www. https://headsmartjordan.khcc.jo), or in part by translating the symptom cards and professional materials into Spanish in Argentina! We are collaborating with many institutions around the world to help them reduce the time to diagnosis for brain tumours. Since the retirement of Professor David Walker, a global group of those interested in the project has been set up following the last ISPNO congress (https://www.ispno2022.de/general-information/welcome-message/) led by Dr Adam Green with involvement from many countries. We actively encourage you to get in touch with us if you want to get involved in the project or you think the materials will be of use to your setting.
About the Author
Shaarna Shanmugavadivel is a Paediatric Register working in Nottingham, UK with an interest in paediatric emergency medicine. She is currently an NIHR Doctoral Research Fellow at the University of Nottingham, and is the Clinical Ambassador for the HeadSmart campaign. Sharna is also Media and Awareness Lead for DFTB Skin Deep: www.DFTBSkinDeep.com .
You can find her on Twitter: @HeadSmartFellow and read more about the research of their team below:
- The Childhood Cancer Diagnosis (CCD) Study: a UK observational study to describe referral pathways and quantify diagnostic intervals in children and young people with cancer. (BMJ Open Paediatrics): https://bmjopen.bmj.com/content/12/2/e058744
- University of Nottingham press release: “Saving young lives with a clearer view of cancer”
https://www.nottingham.ac.uk/vision/saving-young-lives-with-a-clearer-view-of-cancer-1
- University of Nottingham press release: “Experts publish protocol to help speed up cancer diagnosis in children”.
1. Wilne
SH, Ferris RC, Nathwani A, Kennedy CR. The presenting features of brain
tumours: a review of 200 cases. Arch Dis
Child 2006; 91 6:502-6.
2. Aware
HBBT, Aware HBBT, Walker D, Wilne S, Grundy R, Kennedy C, et al. A new clinical
guideline from the Royal College of Paediatrics and Child Health with a
national awareness campaign accelerates brain tumor diagnosis in UK
children—“HeadSmart: Be Brain Tumour Aware”. Neuro-Oncology 2015; 18 3:445-54.
3. Shanmugavadivel
D, Liu JF, Murphy L, Wilne S, Walker D, HeadSmart. Accelerating diagnosis for
childhood brain tumours: an analysis of the HeadSmart UK population data. Arch Dis Child 2020; 105 4:355-62.
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