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Only 32 per cent of adults felt confident in recognising cancer signs and symptoms in children, teenagers and young adults, according to newly published research.

Funded by Children’s Cancer and Leukaemia Group (CCLG), the research assessed public awareness of the risks and symptoms of cancer in children, teenagers and young adults (CTYA) under 18 in Great Britain, as part of the Child Cancer Smart awareness campaign.

Child Cancer Smart is a collaborative research project and awareness campaign led by CCLG and experts at the University of Nottingham, in partnership with the Grace Kelly Childhood Cancer Trust (GKCCT)Young Lives vs Cancer and Teenagers and Young Adults with Cancer (TYAC).

It aims to reduce the time taken to diagnose cancer in children, teenagers and young adults by raising awareness of its signs and symptoms among the general public and healthcare professionals alike.

Cancer is the biggest cause of death by disease in children aged zero to 14 years, with around one in 450 children diagnosed with cancer by the age of 15. The likelihood of developing cancer becomes even higher in teens and young adults with about one in 180 diagnosed by the age of 25.

Despite these figures, the survey results demonstrated that most of the respondents underestimated the risk of cancer in children, selected symptoms associated with adult, rather than childhood cancers and didn’t recognise that disturbed growth or pubertal development were indicators of childhood ill health.

About the survey

A nationally representative sample of 1,000 adults were surveyed across the UK in May 2019 to gauge levels of knowledge and awareness of childhood/teen cancer signs and symptoms. Around half (48 per cent) the respondents were men, most (87 per cent) were White, nine per cent were from Scotland and five per cent were from Wales, 13 per cent were 18–24-year-olds and approximately a third (32 per cent) had children under the age of 16 living in their household.

The survey included questions on:

  • perceived risk
  • overall confidence in recognising cancer signs and symptoms
  • sources of further information
  • which, if any symptoms merited discussion with a doctor and how quickly
  • knowledge of symptoms indicative of cancer in a child/teen.

Survey results

Over two thirds (68 per cent) of respondents said they weren’t confident about identifying the tell-tale signs and symptoms. Symptoms deemed to require medical assessment within 48 hours by over half the participants included seizures/fits, blood in urine or stool and persistent vomiting, but on average, respondents identified only 11 out of 42 classic signs and symptoms.

The most recognised symptoms included lump, swelling in pelvis, testicle or breast (46 per cent), blood in urine or stool (44 per cent), changes to moles (43 per cent), lump/swelling in the chest wall or armpits (41 per cent) and weight loss (40 per cent).

Symptoms which respondents deemed ‘less urgent’ and would allow more than three months to pass or not seek medical advice included early/delayed puberty (55 per cent), slow growth (48 per cent), developmental delay in young children under two (46 per cent), persistent/recurrent sore throat or hoarse voice (43 per cent) and slow in recovery after bone or joint injury (43 per cent). Notably, slow growth and early/delayed puberty were not considered as symptoms to discuss with doctors by six per cent and eight per cent of respondents, respectively.

David Walker, Emeritus Professor of Paediatric Oncology and senior author of the paper, explained: “There is a misunderstanding that the symptoms of children’s cancer are like adult cancer. The knowledge gap justifies public awareness programmes aimed at correcting this misunderstanding.

“A key health parameter in childhood is growth and developmental progress. Disturbances of these justify further investigation. Cancers must be considered as part of investigations.”

The survey also highlighted the perceived rarity of cancer in children as a potential barrier to early diagnosis, with more than half (56 per cent) of respondents perceiving the risk to be higher than expected. While the number of cases may be small compared to adult cancers, the cumulative risk from birth to early adulthood is comparable to that of other childhood illnesses.

Next steps

Dr Shaarna Shanmugavadivel, a paediatrician, NIHR Doctoral Research Fellow at University of Nottingham and co-author of the paper, said: “We know that early diagnosis is crucial to ensuring the best possible outcomes for children with cancer.

“Early diagnosis, means less advanced disease at diagnosis, meaning less intensive treatment needed for a cure. In order to achieve the earliest possible diagnosis, the public need to be aware of what symptoms need medical attention.

“Using these results, we can put interventions in place to improve awareness and knowledge amongst the general public, including targeted information for certain groups, including healthcare professionals to accelerate diagnosis.

“This data will be crucial to informing the Child Cancer Smart awareness campaign, providing information about gaps in public awareness and knowledge which we can address through messaging in the campaign.

“The next steps are to work with members of the public, and young people and families who have had experience of childhood cancer to translate these research findings into key messages for the campaign.”

The responses additionally indicated that symptom awareness and understanding of the resources available to find out more health information, or raise concerns, varied by age, ethnicity, and social class.

Jo-Fen Liu, an epidemiologist at the University of Nottingham and the lead author of the research, added: “The study also highlights disparities in awareness among different demographic groups. Specifically, symptom awareness among ethnic minorities and individuals from less affluent backgrounds were significantly lower.

“This emphasises the need for targeted awareness activities to address these gaps and ensure that all segments of the population are equipped with the necessary knowledge.”

Trusting parent intuition

Many parents of children diagnosed with cancer said that they had a gut feeling or instinct that something wasn’t right with their child, so it is important that their concerns are listened to. This is why parental concern is listed as a high priority for GPs to consider when referring a child or young person to hospital for suspected cancer.

David Walker has seen first-hand the importance of listening to parents. He explained: “For practitioners, trusting parent intuition, especially when symptoms persist is a key message. The frequency of cancer in early life means that it should always be considered a risk in investigating an unwell child.”

The research, published in Archives of Disease in Childhood, is titled ‘Public Awareness of Childhood, Teenagers and Young Adult (CTYA) Cancer Signs and Symptoms in Great Britain: A Cross-sectional Survey’.