Award Title: Childhood cancer diagnosis: quantifying national diagnostic intervals and developing professional and public decision support tools for earlier diagnosis.
Funder: Department of Health and Social Care

Abstract: BackgroundCancer is the commonest cause of death of children in the UK and many experience long delays to diagnosis. Early diagnosis will reduce morbidity, mortality and treatment burden, improving quality of life into adulthood. An evidence-based national awareness campaign has reduced diagnosis times for children with brain tumours, improving survival and outcomes.This research will quantify diagnostic intervals for children nationally and provide high quality guidance. An accompanying awareness campaign will help reduce diagnostic intervals.Aims1. Assess the UK diagnostic intervals for children diagnosed with all childhood cancers and identify factors associated with diagnostic delays.2. Enhance awareness and recognition of bone and abdominal childhood cancer symptoms amongst the public and Health Care Professionals (HCPs).3. Develop standard operating procedures to apply this methodology to other conditions.Objectives:1. Establish a national cohort study, to determine cancer referral pathways and total diagnostic intervals of incident cases at the 19 principal treatment centres for 4 major childhood cancer types: 1) leukaemias, 2) solid tumours (chest, abdomen, pelvis), 3) head/ neck cancers 4) bone/soft tissue cancers.2. Develop guidance on the recognition, assessment and investigation of paediatric abdominal and bone cancers.3. Develop a standard operating procedure to replicate guidelines and awareness tools for other childhoodcancers. 4. Develop public awareness tools and plan a public and professional awareness campaign to reduce the total diagnostic interval for abdominal and bone cancers.MethodsA prospective national cohort study across all 19 UK Principal Treatment Centres will be conducted. Data will be collected on age at diagnosis, onset of symptoms, first visit to HCP and date and place of diagnosis. Descriptive analysis will be used to characterise the study population. Subgroup analysis of tumour type, age and region will be performed.HCPs and patients will review current evidence base on the presentation of bone and abdominal tumours, answering questions on appropriate investigation and referral timings in a multi-disciplinary workshop. Statements derived from this workshop will be sent to experts in the field using a modified Delphi-consensus process. Consensus will be defined as >70% agreement. This will inform a clinical guideline on the recognition, assessment and investigation of abdominal and bone tumours in children in accordance with AGREE-II criteria which will be sent for stakeholder consultation prior to RCPCH endorsement.To inform the awareness tools and campaign, 3 focus groups will be conducted with general public, cancer survivors and parents. Symptom cards, branding and website content and design will be developed by charity partners using content from the guideline. Anticipated impact and disseminationA detailed dissemination plan for public and professionals will aid widescale dissemination through conferences, journals, social media and advertising. This will enhance awareness of the signs/symptoms of these cancers and promote earlier diagnosis, reducing the diagnostic interval nationally.This research will impact the children and families sadly affected by cancer through earlier diagnosis and better survival and long-term outcomes; healthcare professionals by increasing their confidence in diagnosis and changing practice and the have a large cost benefit for our NHS.

Lay Abstract: Why is this research needed?Childhood cancer is the commonest cause of death in the UK and many experience long delays to diagnosis. Delayed diagnosis can lead to worse survival for patients and poorer long-term health for survivors. An evidence-based national awareness campaign has halved diagnosis times for children with brain tumours in the UK, improving survival and long-term disabilities.With this research we will understand the time it takes to diagnose children and young people with all cancers across the UK. The research will also start to address delays by developing high quality guidance on bone and abdominal cancers and produce awareness tools for a national awareness campaign to promote earlier diagnosis.What are the important questions that will be answered?How long does it take for children/young people in the UK to be diagnosed with cancer?What factors affect delays in diagnosis?What is the best practice for identifying, investigating and referring children/young people with symptoms suggestive of a bone or abdominal cancer? How will the research be done?1. National cohort study: data will be collected on every child diagnosed with cancer across 19 childhood treatment centres in the UK. Data will be analysed to understand the factors affecting their journey and time to diagnosis.2. Guideline development: a modified-Delphi consensus process will be conducted using statements derived from a workshop of professionals, childhood cancer survivors and parents. This will inform a new clinical guideline advising symptom recognition, and appropriate referrals.3. Awareness tool development: the guideline will be translated into awareness tools including symptom cards and a website to share with the public through an awareness campaign run by our charity partners.4. Focus groups: 3 groups will be run (general public, parents of child with cancer, childhood cancer survivors) to plan strategies for the awareness campaign and understand stakeholder needs. Where will the research take place and who is the research team?The research will take place at the Children's Brain Tumour Research Centre in Nottingham and be led by Dr Shaarna Shanmugavadivel who is a paediatrician and researcher. She is supported by a research group who are experts in early diagnosis of cancer, research design, statistics and developing guidelines.How have patients and public been involved?The idea was peer-reviewed at a Cancer Research UK sandpit event supported by people affected by cancer. Patient advisors have reviewed the project plan and will continue to be involved with the guideline and awareness tool development to ensure they meet the needs of patient and the public. 3 focus groups will be held with patients and the public to inform the awareness campaign.How will the research benefit patients and the NHS?The guideline and awareness tools will improve the confidence of HCPs and the public in spotting bone and abdominal cancer symptoms and promote earlier diagnosis. This will improve the chance of survival, reduce the amount of treatment needed for a cure and reduce long term effects on health into adulthood. It will also save money for the NHS as it costs more to treat advanced disease.How will the results be shared?The results will be translated and shared through a national public and professional awareness campaign called BodySmart in order to reduce the time to diagnosis for children and young people across the UK.Established partnerships with charities and professional bodies including, Children's Cancer and Leukaemia Group (CCLG), Association of Paediatric Emergency Medicine (APEM), Teenage Cancer Trust (TCT) and CLIC Sargent will share results through a plan of action including conferences, journals and social media.

Research Activity Codes: 4.2 EVALUATION OF MARKERS AND TECHNOLOGIES;7.3 MANAGEMENT AND DECISION MAKING
Health Categories: CANCER AND NEOPLASMS