HeadSmart campaign shows success within one year

The campaign was the brainchild of the Children’s Brain Tumour Research Centre at The University of Nottingham, Samantha Dickson Brain Tumour Trust and the Royal College of Paediatrics and Child Health. It resulted from concern among health professionals and parents about the length of time it was taking to diagnose brain tumours in children, thus delaying treatment.

“Brain tumours in children can be very difficult to diagnose for two reasons,” said Dr Sophie Wilne, a consultant paediatric oncologist at Nottingham Children’s Hospital. “The initial symptoms are often non-specific and can occur with other more common and less serious childhood illnesses. There is also lack of awareness among healthcare professionals that brain tumours do occur in children. Most childhood brain tumours are curable and we know that if we reduce the time taken to diagnosis we will reduce the likelihood of a child suffering from long-term, life-altering disability.”

A study of 155 children diagnosed before the launch last year showed that the average interval between onset of symptoms and diagnosis was 9.3 weeks. Recent figures from 219 children diagnosed since the launch show a reduction to 7.5 weeks. These figures are encouraging but highlight the need for further education of the symptoms caused by brain tumours for both parents and health professionals.

The campaign is based on a clinical guideline that is endorsed by the Royal College of Paediatrics and Child Health and accredited by NHS Evidence. The campaign aims to enhance awareness of the signs and symptoms of childhood brain tumours among parents and health professionals, and guide them about what to do if they are concerned. The resources include a website, symptom awareness cards and other literature, which are being distributed and publicised around the country. The campaign is designed to provide parents and carers with knowledge about the initial symptoms of a brain tumour. This knowledge will help them to decide whether their child needs to see a doctor and help them effectively communicate their concerns with the doctor.

HeadSmart also provides health professionals with information and advice on how to identify the cause of symptoms and what the next steps should be if they think the child might have a brain tumour. It also includes an online education module for health professionals. The module is designed to teach doctors about the symptoms and signs caused by brain tumours and how to decide which children and their families can be reassured, which should be reviewed and which need immediate scanning.

Dr David Walker, Professor of Paediatric Oncology at The University of Nottingham’s Children’s Brain Tumour Research Centre and lead clinician on the HeadSmart campaign, was pleased to have had so much support from colleagues from the children brain tumour centres across the UK and Ireland. “They have played key roles in sharing the campaign messages with local health services and assisted with the recording of symptom intervals as patients present to them. These activities have enhanced the confidence of paediatricians in both reassuring patients who do not need scans, as well as identifying those who need urgent scanning. Their participation in real time measurement of symptom interval allows us to demonstrate the effectiveness of the HeadSmart campaign and enhance its momentum.”

Recently the HeadSmart campaign has been shortlisted for the BMJ’s Improving Healthcare Award for Excellence in Healthcare Education. This recognises the work HeadSmart has already done to raise critical awareness of this issue.

Sarah Lindsell, CEO at Samantha Dickson Brain Tumour Trust has welcomed the initial results. “This is, of course, great news,” she said. “The HeadSmart campaign has been going for less than a year, so to see results at this stage is just phenomenal.” But she isn’t complacent. “We still have a long way to go and the whole team, across the partner organisations, is working hard to ensure that medical professionals and parents recognise the symptoms of brain tumours in children and young people and so further reduce the time it takes for tumours to be diagnosed.” 

The centre is also one of the projects set to benefit from the Impact Campaign, the biggest fundraising campaign in The University of Nottingham’s 130 year history. It aims to raise £150m to transform research, enrich the student experience and enable the institution to make an even greater contribution to the global communities it serves.

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1. Samantha Dickson Brain Tumour Trust, the Royal College of Paediatrics and Child Health and the Children's Brain Tumour Research Centre at The University of Nottingham joined forces to create a major campaign — HeadSmart — raising awareness of the symptoms of brain tumours in children and young people. The campaign was launched on June 8 2011 and targets clinicians, parents, carers and young people, educating them how to recognise the symptoms of brain tumours. Brain tumours are the leading cause of cancer-related death in children and 60 per cent of surviviors are left with long-term, life-altering disability. Early diagnosis can reduce this.
2. The HeadSmart project is supported by the Royal College of General Practitioners.
3. An evidence based best practice guideline The Diagnosis of Brain Tumours in Children, endorsed by Royal College of Paediatrics and Child Health (RCPCH), for the referral of children with suspected brain tumours has been developed and is available from www.HeadSmart.org.uk
4. The process used by the Children’s Brain Tumour Research Centre at The University of Nottingham to produce the ‘Diagnosis of Brain Tumours in Children’ guideline has been formally appraised under the NHS Evidence Accreditation Scheme, assuring staff that they are accessing some of the best information available online to make informed decisions about patient care.
5. In this study, the time for diagnosis has been measured using the median as a measure of average — half of the children were diagnosed in less than the average time and half of the children took longer.
6. The HeadSmart project is funded by Samantha Dickson Brain Tumour Trust and received additional funding from the The Health Foundation during the launch phase.
7. The most typical symptoms of brain tumour in children and young people include:
• Persistent or recurring vomiting
• Persistent or recurring headaches
• Deteriorating vision
• Blurred or double vision
• Poor balance and co-ordination
• Abnormal eye movements
• Fits or seizures
• Behavioural changes, especially tiredness
In older children or teenagers, symptoms can also include slow or late start of puberty.

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Notes to editors: The University of Nottingham, described by The Sunday Times University Guide 2011 as ‘the embodiment of the modern international university’, has 40,000 students at award-winning campuses in the United Kingdom, China and Malaysia. It is ranked in the UK's Top 10 and the World's Top 75 universities by the Shanghai Jiao Tong (SJTU) and the QS World University Rankings. It was named ‘the world’s greenest university’ in the UI GreenMetric World University Ranking 2011.

More than 90 per cent of research at The University of Nottingham is of international quality, according to the most recent Research Assessment Exercise. The University’s vision is to be recognised around the world for its signature contributions, especially in global food security, energy & sustainability, and health. The University won a Queen’s Anniversary Prize for Higher and Further Education in 2011, for its research into global food security.

Impact: The Nottingham Campaign, its biggest ever fund-raising campaign, will deliver the University’s vision to change lives, tackle global issues and shape the future. More news