Delivered relative dose intensity in adolescent and young adult germ cell tumours in England: Assessment of data quality and consistency from clinical trials compared to national cancer registration data
Adolescent and young adults (AYA) with germ cell tumours (GCT) have poorer survival rates than children and many older adults with the same cancers. There are several likely contributing factors to this, including the treatment received. The prognostic benefit of intended dose intensity is well documented in GCT from trials comparing regimens. However, evidence specific […]
Patient and public involvement to inform priorities and practice for research using existing healthcare data for children’s and young people’s cancers
CONCLUSIONS: In order to improve public and patient trust in our use of data for research, we need to improve communication about how data is used and the benefits that arise. Res Involv Engagem. 2023 Aug 29;9(1):71. doi: 10.1186/s40900-023-00485-8. ABSTRACT BACKGROUND: In the United Kingdom, healthcare data is collected on all patients receiving National Health […]
Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study
CONCLUSIONS: Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals’ experiences of delivering care, and families’ experiences of receiving it. There are considerable […]
Consultant-led UK paediatric palliative care services: professional configuration, services, funding.
Abstract Objectives: To systematically gather information on the professional team members, services provided, funding sources and population served for all consultant-led specialised paediatric palliative care (SPPC) teams in the UK. Methods: Two-part online survey. Results: Survey 1: All 17 medical leads from hospital-based or hospice-based SPPC teams responded to the survey (100% response rate).Only six services met the […]
Consultant-led UK paediatric palliative care services: professional configuration, services, funding
CONCLUSIONS: One-third of services met the minimum criteria of professional team as defined by NICE. Most services relied on charity funding to fund part or all of one professional post and only one NHS-based service received all its funding directly from the NHS. BMJ Support Palliat Care. 2023 Aug 9:spcare-2023-004172. doi: 10.1136/spcare-2023-004172. Online ahead of […]
Identifying the important social outcomes for childhood cancer survivors: an e-Delphi study protocol
INTRODUCTION: Optimising the health of childhood cancer survivors is important given the high long-term survival rate coupled with a significant late effects burden. Included within the WHO’s definition of ‘Health’ are social outcomes. These are of interest given their impact on adult functioning within society, complex interactions with physical and mental health outcomes and potential […]
Data Resource Profile: Yorkshire Specialist Register of Cancer in Children and Young People (Yorkshire Register)
No abstract Int J Epidemiol. 2023 Feb 8;52(1):e18-e26. doi: 10.1093/ije/dyac195. NO ABSTRACT PMID:36228114 | PMC:PMC9908036 | DOI:10.1093/ije/dyac195
Social outcomes after childhood illness: the missing measure
No abstract Arch Dis Child. 2023 Apr;108(4):e8. doi: 10.1136/archdischild-2021-323513. Epub 2022 Mar 31. NO ABSTRACT PMID:35361611 | DOI:10.1136/archdischild-2021-323513
International variation in childhood cancer mortality rates from 2001 to 2015: Comparison of trends in the International Cancer Benchmarking Partnership countries
Despite improved survival rates, cancer remains one of the most common causes of childhood death. The International Cancer Benchmarking Partnership (ICBP) showed variation in cancer survival for adults. We aimed to assess and compare trends over time in cancer mortality between children, adolescents and young adults (AYAs) and adults in the six countries involved in […]