Access to principal treatment centres and survival rates for children and young people with cancer in Yorkshire, UK

Abstract

BackgroundPrincipal Treatment Centres (PTC) were established to provide age-appropriate care as well as clinical expertise for children and young people with cancer. However, little is known about the effects of specialist treatment centres on survival outcomes especially for teenagers and young adults. This population-based study aimed to describe access to PTC and the associated trends in survival for 0–24 year olds accounting for stage of disease at presentation and treatment.MethodsPatients diagnosed from 1998–2009 aged 0–24 years were extracted from the Yorkshire Specialist Register of Cancer in Children and Young People, including information on all treating hospitals, followed-up until 31st December 2014. The six commonest cancer types were included: leukaemia (n = 684), lymphoma (n = 558), CNS tumours (n = 547), germ cell tumours (n = 364), soft tissue sarcomas (n = 171) and bone tumours (n = 163). Treatment was categorised into three groups: ‘all’, ‘some’ or ‘no’ treatment received at a PTC. Treatment at PTC was examined by diagnostic group and patient characteristics. Overall survival was modelled using Cox regression adjusting for case-mix including stage, treatment and other socio-demographic and clinical characteristics.ResultsOverall 72% of patients received all their treatment at PTC whilst 13% had no treatment at PTC. This differed by diagnostic group and age at diagnosis. Leukaemia patients who received no treatment at PTC had an increased risk of death which was partially explained by differences in patient case-mix (adjusted Hazard Ratio (HR) = 1.73 (95%CI 0.98–3.04)). Soft tissue sarcoma patients who had some or no treatment at PTC had better survival outcomes, which remained after adjustment for patient case-mix (adjusted HR = 0.48 (95%CI 0.23–0.99)). There were no significant differences in outcomes for other diagnostic groups (lymphoma, CNS tumours, bone tumours and germ cell tumours). For leukaemia patients survival outcomes for low risk patients receiving no treatment at PTC were similar to high risk patients who received all treatment at PTC, implying a benefit for care at the PTC.ConclusionThis study demonstrates that for leukaemia patients receiving treatment at a PTC is associated with improved survival that may compensate for a poorer prognosis presentation. However, further information on risk factors is needed for all diagnostic groups in order to fully account for differences in patient case-mix.Electronic supplementary materialThe online version of this article (doi:10.1186/s12885-017-3160-5) contains supplementary material, which is available to authorized users.

Socio-economic patterning in early mortality of patients aged 0–49 years diagnosed with primary bone cancer in Great Britain, 1985–2008

“…Another study from the UK found that routes to diagnosis for sarcoma patients differ from other cancer [28]. However, access to care is unlikely to be socio-economically determined for children but for young people (ages 15-24 years) this is not the case as only around half are seen in regional specialist centres [29]. There is a need for studies of both compliance and access to care specifically for bone tumours in order to understand fully how these factors affect survival.…”

Risk stratification of young adult survivors of cancer to estimate hospital morbidity burden: applicability of a pediatric therapy-based approach

“…Previous work has found a high degree of concordance between late-effect clinicians who independently assign NCSI levels [ 19 ]. This database was linked with the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP), a unique population-based dataset capturing clinical and epidemiologic information on 0–29 year old’s diagnosed with cancer whilst resident in the Yorkshire and Humber region, comprising clinical, patient, and sociodemographic variables [ 20 ]; record-level matching was carried out using National Health Service (NHS) number and name. The survivor cohort was defined using data drawn from the YSRCCYP, restricting the LTHT follow-up database to all 5-year survivors diagnosed aged 0–29 years between 1992 and 2012 (Fig.…”

Processes of care and survival associated with treatment in specialist teenage and young adult cancer centres: results from the BRIGHTLIGHT cohort study

“…24 A previous retrospective regional study of children and TYA in England found a survival benefit of being treated in a PTC for poor prognosis leukaemia and a converse relationship for those with soft tissue sarcoma, no significant differences in survival were observed for those with lymphoma, CNS, bone and germ cell tumours. 25 Of note, a previous study has also shown those receiving 'SOME' specialist care have poorer survival for some indications (Birch 2013, unpublished thesis). These studies suggest that some tumour groups may benefit from care at the PTC however, due to our previously reported difficulties with recruitment and reduction in sample size 20 we were unable to conduct the detailed analysis of individual cancer types as planned, and thus benefits of the PTC may be masked within the grouping of 'haematology' and 'solid tumours'.…”