title: Evidence for a delay in diagnosis of Wilms' tumour in the UK compared with Germany: implications for primary care for children.
abstract: The UK has a longstanding system of general practice which provides the vast majority of primary care, including that for children. It acts as a 'gatekeeper' to more specialist care. Parents may also use accident and emergency departments as their first point of medical contact for their children. Outcomes in the UK for many conditions in children appear to be worse than in comparable European countries where there is direct access to care by paediatricians. We have therefore looked at pathways to diagnosis and compared outcomes in the childhood kidney cancer, Wilms' tumour, which has been treated in the UK and Germany within the same clinical trial for over a decade. We find that Wilms' tumours are significantly larger in volume and have a more advanced tumour stage at diagnosis in the UK compared to Germany. There is a small (∼3%) difference in event free and overall survival between the two countries. Our data suggest that the system of primary care for children in the UK is less likely to result in the incidental finding of an abdominal mass in a child with no or vague symptoms. This may be a reason for the poorer outcome.
authors.affiliation: University College London Institute of Child Health, London, UK.
authors.forename: Kathy
authors.initials: K
authors.lastname: Pritchard-Jones
authors.affiliation: Department of Paediatric Oncology/Hematology, Saarland University Hospital Homburg, Homburg, Germany.
authors.forename: Norbert
authors.initials: N
authors.lastname: Graf
authors.affiliation: Head Biometrics Department, Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, Netherlands.
authors.forename: Harm
authors.initials: H
authors.lastname: van Tinteren
authors.affiliation: Department of Child Health, Royal Victoria Infirmary, Newcastle upon Tyne, UK.
authors.forename: Alan
authors.initials: A
authors.lastname: Craft
mesh_terms: D000293:Adolescent; D002648:Child; D057210:Delayed Diagnosis / Q000706:statistics & numerical data*; D005858:Germany / Q000453:epidemiology; D006801:Humans; D007680:Kidney Neoplasms / Q000175:diagnosis* / Q000401:mortality; D011320:Primary Health Care / Q000706:statistics & numerical data*; D011379:Prognosis; D015996:Survival Rate; D006113:United Kingdom / Q000453:epidemiology; D009396:Wilms Tumor / Q000175:diagnosis* / Q000401:mortality
keywords: Oncology; Outcomes research; Routes to diagnosis