Search

IntroductionChildhood cancer is diagnosed in 400 000 children and young people (CYP) aged 0–19 years worldwide annually. In the UK, a child’s cumulative cancer risk increases from 1 in 4690 from birth to aged 1, to 1 in 470 by age 15. Once diagnosed, access to treatments offers survival to adulthood for over 80%. Tumour diagnoses are at a later stage and mortality is higher when compared with those in other parts of Europe. This means higher risk, more intensive therapies for a cure. Some CYPs are known to experience delays to diagnosis which may further contribute to poor outcomes. This study aims to understand the current pathway of childhood cancer referrals and diagnosis and quantify diagnostic intervals in the UK.Methods and analysisThis is a prospective multicentre observational study including all tertiary childhood cancer treatment centres in the UK. CYP (0–18 years) with a new diagnosis of cancer over the study period will be invited to participate. Data will be collected at initial diagnosis and 5 years after diagnosis. Data will include demographic details, clinical symptoms, tumour location, stage and clinical risk group. In addition, key diagnostic dates and referral routes will be collected to calculate the diagnostic intervals. At 5 years’ follow-up, data will be collected on refractory disease, relapse and 1-year and 5-year survival. Population characteristics will be presented with descriptive analyses with further analyses stratified by age, geographical region and cancer type. Associations between diagnostic intervals/delay and risk factors will be explored using multiple regression and logistic regression.EthicsThe study has favourable opinion from the York and Humber, Leeds West REC (19/YH/0416).DisseminationResults will be presented at academic conferences, published in peer-reviewed journals and disseminated through public messaging in collaboration with our charity partners through a national awareness campaign (ChildCancerSmart).Study registrationresearchregistry.com (researchregistry5313).

BackgroundThe COVID-19 pandemic led to changes in patterns of presentation to emergency departments. Child health professionals were concerned that this could contribute to the delayed diagnosis of life-threatening conditions, including childhood cancer (CC) and type 1 diabetes (T1DM). Our multicentre, UK-based service evaluation assessed diagnostic intervals and disease severity for these conditions.MethodsWe collected presentation route, timing and disease severity for children with newly diagnosed CC in three principal treatment centres and T1DM in four centres between 1 January and 31 July 2020 and the corresponding period in 2019. Total diagnostic interval (TDI), patient interval (PI), system interval (SI) and disease severity across different time periods were compared.ResultsFor CCs and T1DM, the route to diagnosis and severity of illness at presentation were unchanged across all time periods. Diagnostic intervals for CCs during lockdown were comparable to that in 2019 (TDI 4.6, PI 1.1 and SI 2.1 weeks), except for an increased PI in January–March 2020 (median 2.7 weeks). Diagnostic intervals for T1DM during lockdown were similar to that in 2019 (TDI 16 vs 15 and PI 14 vs 14 days), except for an increased PI in January–March 2020 (median 21 days).ConclusionsThere is no evidence of diagnostic delay or increased illness severity for CC or T1DM, during the first phase of the pandemic across the participating centres. This provides reassuring data for children and families with these life-changing conditions.

Background The COVID-19 pandemic led to changes in patterns of presentation to Emergency Departments. Child health professionals were concerned that this could contribute to the delayed diagnosis of life-threatening conditions, including childhood cancer (CC) and type 1 diabetes (T1DM). Objectives Our multicentre, UK-based service evaluation assessed diagnostic intervals and disease severity for these conditions. Methods We collected presentation route, timing and disease severity for children with newly diagnosed CC in three principal treatment centres between January-June 2020 and T1DM in four centres between January-July 2020. We compared these to the corresponding period in 2019. The impact of lockdown on total diagnostic interval (TDI), patient interval (PI), system interval (SI) and disease severity were evaluated. Results Children with new diagnosis of CC (n=253) and T1DM (n=187) were included in the analysis. Overall there was a 17% reduction (138 vs 115) in number of incident CC cases and 9% reduction (98 vs 89) in T1DM cases between 2019 and 2020, with some regional variation. No significant differences in gender, ethnic background or age at diagnosis between study periods were observed. The route to diagnosis and severity of illness at presentation were unchanged across all time periods. Median diagnostic interval for CCs during lockdown was comparable to that in 2019 (TDI 4.6, PI 1.1 and SI 2.1 weeks), except for an increased PI during pre-lockdown period Jan-Mar 2020 (2.7 weeks) (table 1). Median diagnostic interval for T1DM during lockdown was similar to that in 2019 (TDI 16 vs 15 and PI 14 vs 14 days), except for an increased PI in pre-lockdown period Jan-Mar 2020 (21 days) (table 2). Conclusions There is no evidence of diagnostic delay or increased illness severity for CC or T1DM during the first lockdown in the participating centres. This provides reassuring data for children and families with these life-changing conditions. Data collection at a more comprehensive national level would provide greater clarity on diagnostic intervals.

BackgroundThe National Institute for Health and Care Excellence (NICE) guidance for referral of children with suspected cancer was first published in 2005 and updated in 2015. The updated version relied on sparse primary care evidence and published without input from key stakeholders, for example, acute general paediatricians and paediatric haematologists/oncologists. This led to a document that fell short as a practical guide for referring physicians managing children with potentially life-threatening conditions. Following discussions between the Children’s Cancer and Leukaemia Group (CCLG, the UK multidisciplinary professional body for healthcare professionals caring for children with cancer) and NICE, it was agreed that a practical supplement should be produced for the 2015 guidance. A prerequisite was evidence gathering from tertiary care to balance the existing primary care evidence, and a Delphi consensus method was therefore convened.MethodsA CCLG NICE Guidance Committee formulated 25 draft statements for review. The CCLG emailed its paediatric haematologist/oncologist membership (n=179) and 88 responded (49%). To achieve consensus, statements required ≥70% agreement from ≥60% of actual respondents, from the denominator (n=88).ResultsFifteen of 25 original statements were accepted at the first round of voting. Three of 25 statements where >50% did not support were rejected outright. One statement could not be revised without replicating a previously accepted statement. The six remaining statements were revised and a second round of voting undertaken; all six revised statements were accepted. Overall, 21 of 25 statements (84%) met consensus criteria.ConclusionsThis expert opinion should help streamline suspected cancer referral in children and help optimise subsequent outcomes.

BackgroundThe COVID-19 pandemic led to changes in patterns of presentation to Emergency Departments (ED). Child health professionals were concerned that this could contribute to the delayed diagnosis of life-threatening conditions, including childhood cancer (CC) and type 1 diabetes (T1DM). Our multicentre, UK-based service evaluation assessed diagnostic intervals and disease severity for these conditions.MethodsWe collected presentation route, timing and disease severity for children with newly diagnosed CC in three principal treatment centres, and T1DM in four centres between 1stJanuary – 31st July 2020 and the corresponding period in 2019. We assessed the impact of lockdown on total diagnostic interval (TDI), patient interval (PI), system interval (SI) and disease severity.FindingsFor CCs and T1DM, the route to diagnosis and severity of illness at presentation were unchanged across all time periods. Diagnostic intervals for CCs during lockdown were comparable to that in 2019 (TDI 4.6, PI 1.1 and SI 2.1 weeks), except for an increased PI in Jan-Mar 2020 (median 2.7 weeks). Diagnostic intervals for T1DM during lockdown were similar to that in 2019 (TDI 16 vs 15 and PI 14 vs 14 days), except for an increased PI in Jan-Mar 2020 (median 21 days).InterpretationThere is no evidence of diagnostic delay or increased illness severity for CC or T1DM, during the first phase of the pandemic across the participating centres. This provides reassuring data for children and families with these life-changing conditions.Research in ContextEvidence before this studyThis project was initiated after the first national lockdown in March 2020 during COVID-19 pandemic in the UK. At the design stage, Medline was searched (with no language limit), using the keywords ((Cancer) OR (neoplasm) OR (Type 1 diabetes mellitus)) AND ((Covid-19) OR (SARS-CoV-2) OR (Pandemics)) AND ((Emergency department attendances) OR (diabetes ketoacidosis) OR (Delayed diagnosis) OR (interval) OR (wait)) to identify publications reporting the impact of the pandemic and public health measures on both overall and paediatric healthcare services. Significant changes in service utilisation in the UK were reported following the commencement of the first lockdown, including a 49% reduction in emergency department attendances in the week following the lockdown; and two adult studies reported that referral via the urgent two-week wait cancer referral diagnoses decreased by 84% from Mar-May and 60% in June 2020. As for Type 1 diabetes (T1DM), a 30 patient UK-study reported an increase in newly diagnosed T1DM during the first six weeks of lockdown. Increased proportions of severe diabetic ketoacidosis (DKA) at presentation were also reported in an Italian survey involving 53 paediatric diabetes centres. Through the search we identified a need for multi-centre, more thorough assessment on referral pathways, time taken from symptom onset to diagnosis, and its association with severity at presentation for children diagnosed with life-changing conditions during the national lockdown.Added value of this studyOur findings suggest that the first national lockdown in the UK were not associated with delayed diagnosis of childhood cancer or type 1 diabetes at participating centres. This provides reassuring information for children and families with these life-changing conditions.ImplicationWe believe that our study can play a key role in allaying parental and professional concern. it is important to establish whether subsequent public health measures have impacted the diagnostic interval in the context of an evolving backlog of patient referrals across the UK.

Despite the increasing diversity of the UK population, we continue to see inequalities in health outcomes in patients of ethnic minorities. Unfortunately, this increasing diversity is not reflected in educational resources, which often continue to feature few images of patients with darker skin tones. Given the lack of diversity in these resources, it is unsurprising that healthcare professionals find it challenging recognising, diagnosing and managing presentations of clinical conditions in darker skinned patients. The development of new online, accessible image banks of medical conditions in different skin tones, such as Skin Deep, aims to facilitate increasing diversity in educational materials and hence improve delivery of equal standards of care to all patients.

Aims Bone tumours in children/young people are often associated with significant diagnostic delay, increasing the risk of amputation. The total diagnostic interval is a sum total of the patient and system interval. The HeadSmart campaign showed a national awareness campaign based on high quality evidenced based guidance halved time to diagnosis. We conducted a systematic review and meta-analysis to identify the core signs/symptoms and a public survey to understand public awareness of these symptoms. Methods Medline, Pubmed and Embase databases were searched from January 2005 – August 2015. Key words included ‘bone tumour(s)’, ‘bone neoplasm(s)’, ‘diagnosis’, ‘signs(s)’, ‘symptom(s)’, ‘presentation(s)’. All papers discussing bone tumour presentation were included. Pooled proportions (%) of children with each sign/symptom at diagnosis were estimated. A face-to-face opinion survey (n=1000; 475 males) was conducted by Ipsos MORI. Questions included perception of cancer risk, confidence in recognising signs/symptoms and urgency of seeking medical advice. Results The search strategy identified 15477 papers. 713 papers were reviewed in full; 11 met the inclusion criteria, describing the symptoms/signs at diagnosis in 1246 children. 29 symptoms/signs were recorded but only those that occurred in 2% or more of patients are reported. These were pain (76%), swelling (21%), fever (4%), history of trauma (3%), functional limitation (3%), palpable mass (3%), pain and swelling (2%), volume increase (2%), limp (2%) and pathological fracture (2%). Public awareness of the top 4 presenting symptoms of bone tumours were low. 23% of the public identified recurrent or persistent bone pain as a symptom of cancer; 27% identified swelling of bone or joint; 21% identified fever and 14% thought a slow recovery after injury or trauma could be a sign of cancer. Conclusions This is the first systematic review on paediatric bone tumours to our knowledge. It provides strong evidence of the common presentations and will form the basis of a new RCPCH endorsed clinical guideline on the assessment/investigation of suspected bone tumours. The results of the public awareness survey highlight low awareness which need to be tackled in order to drive earlier diagnosis. This will form key messaging in our new national awareness campaign called ChildCancerSmart.

Aims To assess public awareness of the risks and symptoms of cancer in children and young adults under 18 in Great Britain and compare them with the published data where 60–94% of adults are aware of their cancer risks and symptoms. Methods A face-to-face, computer-assisted opinion survey was conducted by Ipsos MORI. The population-based sample included 475 males and 525 females over the age of 18 and 26% have children aged 6–15 in the household. Questions covered perception about cumulative cancer risk (1 in 450 by the age 15 and 1 in 180 by 25), confidence in recognising signs and symptoms, recognition and perceived urgency of 42 classical signs and symptoms. Results Over half (56%) of the respondents felt the quoted cumulative age-related cancer risks were higher than they expected. Only 32% felt confident to recognise the signs and symptoms of cancer in the age range. On average, respondents identified 14.9 out of the 42 of the classical signs and symptoms. Top ranked symptoms or signs were: ‘lump, swelling in pelvis, testicle or breast’ (46%), ‘blood in urine or stool’ 44%, ‘changes to moles’ 43%, ‘lump or swelling in the chest wall or armpits’ 41% and ‘weight loss’ 40%. The least recognised symptoms were early or late puberty (10%), developmental delay in young children under 2 (11%) and slow growth (13%), where 8%, 2% and 6%, respectively, felt that there was no need to discuss them with a doctor. Symptoms where more than 50% of respondents judged them as requiring medical assessment within 48 hours were: seizures/fits, blood in urine or stool, persistent vomiting, persistent fever or night sweats. Abnormal facial movements and persistent abdominal pain were added for assessment within 2 weeks. All but one of the symptoms were selected for assessment by 3 months. Conclusions We conclude that public awareness of the risks and signs and symptoms of childhood cancer are substantially lower than awareness for adult cancer population in Great Britain. A similar survey will be conducted amongst healthcare professionals to support the development of campaign materials for a public and professional awareness programme.

Brain tumours are the commonest cancer cause of death in children. Early diagnosis is crucial in preventing worse neurological outcome in survivors, however diagnosis is difficult as presenting symptoms can be non-specific. In 2006 the median total diagnostic interval was more than three months in the UK, three times more than in the USA. "HeadSmart: Be Brain Tumour Aware" was launched in 2011 to amplify the impact of the RCPCH diagnostic guidelines published in 2008. By providing high quality guidance on assessment, investigation and referral as well as distributing symptom cards, signposting the website and providing e-learning resources, we have successfully enhanced awareness in health professionals and the public. Moreover, since the guidance, there has been a statistically significant reduction in the UK's total diagnostic interval from 14.4 weeks in 2006 to one of the shortest in the world at 6.7 weeks. This article reviews the progress that has been made and aims to highlight the advice that has proved useful in reducing the total diagnostic interval.

BackgroundHeadSmart, a public and professional awareness campaign, was launched to enhance awareness of brain tumour symptomatology identified in the Royal College of Paediatrics and Child Health, National Institute for Health and Care Excellence–accredited guideline. Quality improvement data showed a reduction in diagnostic interval nationally. To reach the government target of 4 weeks, we need to identify subgroups with ongoing delays.MethodsIncident cases of brain tumours (0–18) diagnosed between January 2011 and May 2013 across 18 UK centres were included. Anonymised data including demographics, diagnosis and date of symptom onset/presentation were collected. Key outcome measures, total diagnostic interval (TDI), patient interval (PI) and system interval (SI) were calculated. Subanalysis by age, tumour grade and location was also performed.ResultsYoung children (0–5 years) accounted for 38% of cases, with a peak age at diagnosis of 2 years. Central tumours experienced longest intervals with a median TDI of 10.5 weeks, PI of 3.2 weeks and SI of 2.9 weeks. Craniopharyngioma, low-grade glioma and optic pathway gliomas had the longest TDIs with a median of 15.1, 11.9 and 10.4 weeks, respectively. The greatest proportion of delay was in the SI. The 12–18 age group had a median TDI of 12.1 weeks, compared with 8 weeks for the 5–11 age group and 6 weeks for the 0–5 age group (pConclusionsClear patterns of intervals for different age groups and anatomical locations have been demonstrated. Tailoring education and awareness strategies to ensure earlier diagnosis for central tumours and young people is crucial to minimise brain injury, subsequent disability and late effects of treatment for 70% of survivors.

Objective. To determine the common presenting problems for young people attending the emergency department. Design. A retrospective review of electronic patient records of all young people between the ages of 13 and 17 who attended a UK University Hospital ED between 07/02/2007 and 06/02/2008 (n=10455). Results. All emergency department attendances for young people over a one-year period were studied in order to determine the common presenting problems. There were a total of 10455 attendances by 8303 young people. The presenting problem in 7505 (71.8%) was classified as injury. Of the remainder the commonest presenting problems reported for young people were abdominal pain (480, 16.3%), self-harm (314, 10.6%), fits, faints and funny turns (308, 10.4%), breathing difficulty (213, 7.2%), and intoxication (178, 6.0%). Ten presenting problems accounted for 72% of noninjury related attendances. Conclusions. Clinical guidelines and pathways developed for young people attending the emergency department should target the commonest presenting problems. In our cohort ten presenting problems account for almost three-quarters of all noninjury attendances for young people. The presenting problems are different to those described in younger children in previous studies. These results will inform the development of clinical pathways in order to improve emergency care.

Aims The RCPCH guideline entitled Pathways to Diagnosis: The Diagnosis of Brain Tumours was published in 2008 and later accredited by NHS (NICE) Evidence. The HeadSmart: Be Brain tumour aware campaign was launched in 2011 to amplify the guidance and has successfully halved the total diagnostic interval in the UK. We are conducting a systematic review and meta-analysis in order to update the guideline using current published evidence. Methods Medline, Pubmed and Embase databases were searched without language restriction from January 2005–August 2015. Key words were “brain tumour (s)”, “brain tumour (s)”, “brain neoplasm (s)”, “diagnosis”, “signs (s)”, “symptom (s)”, “presentation (s)”. All references were restricted to “all child”. All papers containing data of brain tumour presentation, diagnosis or presenting signs and symptoms were included. A standard data extraction form was used to record the numbers of children with each symptom/sign. Some studies were detailed on individual symptoms (headache, vomiting, papilloedema) whilst others recorded complexes (eg intracranial pressure). If a symptom/sign was not recorded, it was assumed not to have occurred in that population. Results 20,068 papers were identified by the search terms. We reviewed 664 papers in full of which 71 met the inclusion criteria describing the signs and symptoms in 3818 children. A total of 152 symptoms were identified of which 80% presented with signs and symptoms of raised intracranial pressure (including headache and vomiting). Visual symptoms (16%), ataxia (11%), CN palsies (10%) and seizures (9%) together with raised ICP made up the top 5 presenting signs/symptoms. HeadSmart data shows that children with midline supratentorial tumours and adolescents have the longest total diagnostic intervals. Subgroup analyses of tumour location, children under the age of 2, and young people is ongoing. Where no substantial clinical research evidence is identified, a formal consensus method will be used to formulate recommendations. Conclusions Our HeadSmart data has given us valuable guidance as to which subgroups to focus this analysis on. The presentation will summarise the new recommendations which will help us meet the government target of all cancer diagnoses within 4 weeks. The revised draft guideline will be discussed at the conference.

Objective To describe the common medical presenting problems of children attending a paediatric emergency department (ED) compared with 10 years previously. Design A retrospective review of electronic patient record and comparison with previous cohort. Setting A UK university hospital ED. Patients A cohort of children and young people aged 0–15 years who attended the ED between 7 February 2007 and 6 February 2008 (n=39 394) compared with a historical cohort from 10 years earlier. Main outcome measures and results Information on presenting problem, demographic data and source of referral were collected. Presenting problems were ranked and comparisons made with previous data using the difference between proportions analysis and the significance test for a difference in two proportions. A total of 39 394 children (57% boys) were seen with 14 724 medical attendances compared with 10 369 attendances from the 1997 cohort, an increase of 42%. Most (85%) ED attendances can be accounted for by the 10 most common presenting problems, including breathing difficulty (2494, 20.1%), febrile illness (1752, 14.1%), diarrhoea with or without vomiting (1731, 14.0%), rash (1066, 8.6%) and cough (835, 6.7%). Similar proportions are described to a decade earlier; however, there were fewer patients attending with breathing difficulty (−10.9%, p Conclusions Over a 10-year period, there has been a rise in the number of people attending the ED with medical conditions. The 10 most common presenting problems account for 85% of medical attendees. These results suggest the increasing utilisation of ED services for children with common medical presenting problems and should inform further research exploring the pathways for attendance and the thresholds in seeking medical advice in order to inform the commissioning of paediatric emergency and urgent care services.