Recruitment of childhood leukaemia patients to clinical trials in Great Britain during 1980-2007: variation by birth weight, congenital malformation, socioeconomic status and ethnicity.

OBJECTIVE: To assess recruitment of children to national clinical trials for acute lymphoblastic leukaemia (ALL) and acute myeloid leukaemia (AML) in Great Britain during 1980-2007 and describe variation by some factors that might influence trial entry. DESIGN AND SETTING: Records of leukaemia patients aged 0-14 years at diagnosis were identified in the National Registry of Childhood Tumours and linked to birth registrations, Children's Cancer and Leukaemia Group records, Hospital Episode Statistics and Medical Research Council clinical trial registers. Trial entry rates were compared between categories of birth weight, congenital malformation, socioeconomic status and ethnicity. RESULTS: 9147 ALL and 1466 AML patients were eligible for national clinical trials during 1980-2007. Overall recruitment rates were 81% and 60% respectively. For ALL, rates varied significantly with congenital malformation (Down syndrome 61%, other malformations 80%, none 82%; p<0.001) and ethnicity (South Asian 78%, other minority groups 80%, white 85%; p<0.001). For AML, rates varied with birth weight (< 2500 g 48%, 2500-4000 g 69%, >4000 g 67%; p=0.001) and congenital malformation (Down syndrome 28%, other malformations 56%, none 63%; p<0.001). CONCLUSIONS: Although recruitment rates to clinical trials for childhood leukaemia are high, future trials should monitor possible variation by birth weight, ethnicity and presence of congenital malformations.

Place of death and hospital care for children who died of cancer in England, 1999-2006.

AIM: To describe patterns of hospital care and to evaluate factors influencing place of death for children who died after a diagnosis of cancer in England during 1999-2006. MATERIALS AND METHODS: Registrations of children on the National Registry of Childhood Tumours (NRCT) who were diagnosed with cancer and died during 1999-2006 in England were linked to the Hospital Episode Statistics (HES) and to death certificates. Multivariable logistic modelling was used to assess factors that influence dying at home or in hospital. RESULTS: 1864 (96%) of children with cancer registrations were linked to HES records. The validation of hospital as a place of death and ethnicity between data sources was good, although anomalies within HES data exist. Similar proportions of children are dying at home (45%) and in hospital (47%), and the percentage dying in a hospice or care home increased from 2% to 10%. Of the children who died in hospital, 74% were admitted as emergencies or as a transfer from another hospital. Greater proportions of children were diagnosed with a leukaemia or lymphoma, those dying within six months of diagnosis, Asian and Black children, those from a deprived background and those not treated in a CCLG centre died in a hospital. CONCLUSIONS: Patterns of hospital care varied considerably by type of cancer, death within six months of diagnosis, ethnicity and deprivation. Further research is required to elucidate explanations for these patterns and to evaluate methods to increase the proportion of children dying at home who wish to do so.