Delays in cancer diagnosis persist for young people with certain tumors

A new study, led by experts at the University of Nottingham, has found that young people suffering from certain types of cancer, such as bone tumors, are experiencing lengthy times to diagnosis.

The Childhood Cancer Diagnosis Study, which is published in the Lancet Regional Health - Europe, was funded by the National Institute for Health and Care Research (NIHR).

Childhood cancer has been declared a global disease burden, with early diagnosis a priority. The aim of this study was to help researchers understand the journey that children and young people experience from the start of their symptoms until they receive their cancer diagnosis.

To do this, the team of researchers, led by Dr. Shaarna Shanmugavadivel, Professor Shalini Ojha and Professor David Walker from the School of Medicine at the University of Nottingham, collected the data of 1,957 children and young people (aged 0-18 years) diagnosed with cancer between September 2020 and March 2023.

For the first time, we understand the current landscape of childhood cancer diagnosis in the UK. We can celebrate that ethnicity, sex and socioeconomic status have no impact on time to diagnosis, but there is an urgent need to focus efforts on young people and tumor types such as bone tumors that are still experiencing lengthy intervals. Earliest possible diagnosis is key as time is crucial. Untreated, tumors grow bigger and can spread around the body, requiring more extensive surgery and more intensive therapies to offer cure."

Dr. Shaarna Shanmugavadivel, Professor Shalini Ojha and Professor David Walker, School of Medicine, University of Nottingham

The study found that the total time to diagnosis from first symptom to confirmed diagnosis varied widely from the same day to several years. The median time to diagnosis was 4.6 weeks, but this varied by age and cancer type. Teenagers (15-18 years) experienced the longest median time to diagnosis (8.7 weeks), whereas infants under one year had the shortest (3.7 weeks).

Among cancer types, bone tumors had the longest median diagnostic interval (12.6 weeks), while kidney tumors had the shortest (2.3 weeks).

Importantly, the study found that factors such as sex, ethnicity, and socioeconomic status did not influence the time to diagnosis.

The researchers also studied the routes to diagnosis, including the number of healthcare visits before a confirmed diagnosis. Most children and young people (74%) had between one and three medical visits before being diagnosed, and two-thirds (67%) were diagnosed in an emergency setting.

The majority first consulted a GP or an emergency doctor. Some cancer types, including Langerhans Cell Histiocytosis (LCH), bone tumors, soft tissue tumors, and brain tumors, were associated with a higher number of medical visits before diagnosis.

This data highlights that, whilst access to diagnosis is equal across different demographic groups, some children and young people, particularly teenagers and those with certain types of cancer, experience longer times to diagnosis.

"The findings will help focus efforts towards closing the gap for these groups, ensuring more children and young people receive a diagnosis sooner," says Dr. Shanmugavadivel. 

"The results will feed into the Child Cancer Smart campaign led by CCLG: The Children & Young People's Cancer Association, which aims to promote earlier diagnosis, through awareness and education of the public and healthcare professionals."

Ashley Ball-Gamble, CEO of CCLG and co-author on the study, said: "Childhood cancer knows no boundaries - it affects children and young people of all ages, backgrounds, and walks of life. However, our research has revealed important differences in how long diagnosis takes.

"It's crucial that we understand why certain groups, such as older teenagers, or those with certain cancers, such as bone and brain tumors, are likely to face a lengthier diagnosis. By recognising these differences, we hope to work towards faster diagnoses and improved survival rates."

Dr. Sharna Shanmugavadivel has recently been appointed as the Vice-Chair of the Children and Young People Taskforce at the Department of Health and Social Care. The taskforce brings together the country's top experts to set out plans to improve treatment, detection and research for cancer in children and young people, which will feed into the National Cancer Plan. 

Dr. Shanmugavadivel adds: "We are grateful to have the opportunity to use this data as a community through the Children and Young People Cancer Taskforce to develop recommendations for the National Cancer Plan so that we can continue to monitor progress whilst developing policy, professional and public health strategies to accelerate diagnosis."