Yorkshire Specialist Register of Cancer in Children and Young People

Recent research

Recent research by the YSRCCYP includes;

  • Analysis of the long term effects of treatment on survivors of childhood and young adult cancer, following on from the work on cardiovascular related episodes within inpatient hospital admissions, with a specific focus on mental health and respiratory illness.
  • To identify factors which influence length of survival for low grade brain tumours, especially among adolescents and young adults, results which will contribute to a major European analysis of these tumours
  • To calculate future cancer incidence rates and prevalence statistics in Yorkshire between 2017-2030, firstly to enable healthcare managers to plan future services and secondly to supply the Candlelighters Trust with the latest cancer statistics for dissemination to families.
  • To investigate unusual family patterns of cancers which occur within siblings.
  • To assess the effect of chemotherapy on patient outcome using enhanced treatment data obtained through linkage with the national Systemic Anti-Cancer Therapy (SACT) dataset and hospital electronic prescribing systems such as ChemoCare.

Respiratory morbidity in young people surviving cancer: Populationā€based study of hospital admissions, treatmentā€related risk factors and subsequent mortality

Smith et al, 2019

Respiratory diseases are a major cause of late morbidity and mortality amongst childhood cancer survivors. This population-based study provides comprehensive analysis of hospitalisations for respiratory conditions, the associated risks of admission by earlier cancer treatment and trends in readmissions and subsequent mortality in long-term survivors of cancers diagnosed under 30 years. The risk of hospitalisation was significantly higher in cancer survivors compared to the general population. Treatment with chemotherapy with known lung toxicity was associated with an increased risk of admissions for all respiratory disease especially pneumonia. Subsequent mortality was highest in those admitted for pneumonia compared to other respiratory conditions.

Long term survival after childhood acute lymphoblastic leukaemia: population-based trends in cure and relapse by clinical characteristics

Smith et al, 2018

Statistical “cure models” provide additional metrics useful to identify and describe trends in survival. Additional measures include the proportion cured which is a summary of the long term survival and the median survival of the uncured which give information on those who are not long-term survivors. In this study we used a statistical cure model to explore trends in long-term survival and relapse for childhood acute lymphoblastic leukaemia (ALL) over time and by clinical characteristics. The proportion of patients cured, defined either by overall survival or relapse free survival, has increased over time while there was slight decrease in the median survival time of the uncured. We also observed a significant reduction in the risk of relapse over time.

Comparison of ethnic group classification using naming analysis and routinely collected data

(Smith et al, 2017)

In this study we compared cancer incidence trends using different methods for assigning ethnic groups to individuals: 1 – using ethnic group recorded in hospital medical records, 2 – using a naming software program to assign an ethnic group based on the ethnic origins of the individuals and 3 – using a combination of both processes. We found that using different methods of assigning ethnicity can result in different estimates of ethnic variation in cancer incidence. Combining ethnicity from multiple sources results in a more complete estimate of ethnicity than the use of one single source. 

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

(Fairley et al, 2017)

This study described access to Principal Treatment Centres (PTC) for children (0-14 years) and teenagers and young adults (15-24 years) and the associated trends in survival. Between 1998 and 2009, 72% of all patients aged 0-24 years received all their treatment at PTC whilst 13% had no treatment at PTC. 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 = 1.73 (95% Confidence interval 0.98-3.04). For leukaemia, 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 of care at the PTC. 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)), however we were unable to account for differences in stage at presentation, which may confound this finding. There were no significant differences in outcomes for other diagnostic groups (lymphoma, CNS tumours, bone tumours and germ cell tumours)

Level of treatment at PTC by diagnostic group and age group, Yorkshire 1998–2009

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Population mixing and incidence of cancers in adolescents and young adults between 1990 and 2013 in Yorkshire, UK

(Imam at al, 2016)

This study investigated the associations between infection transmission using the population mixing proxy and incidence of cancers in 15-24 year olds in Yorkshire. No significant associations between population mixing and cancer incidence were found for leukaemias, lymphomas, central nervous system tumours or germ cell tumours. This effect did not differ between urban and rural areas. 

Incidence and survival of children and young people with central nervous system embryonal tumours in the North of England, 1990 – 2013

(Fairley et al, 2016)

This study described the incidence and survival from CNS embryonal tumours, specifically medulloblastoma and primitive neuroectodermal tumours (CNS PNET), for children (0-14 years) and teenagers and young adults (15-24 years) in the North of England. Between 1990 and 2013 the incidence of medulloblastoma decreased over time, most likely due to improvements in molecular testing and classification of tumours over time. The risk of death was 2.4 times higher for patients with CNS PNET compared to medulloblastoma (Hazard ratio = 2.4 (95% Confidence Interval 1.6-3.7) and the risk of death decreased by 39% for patients diagnosed since 2000 compared to those diagnosed in the 1990s (HR=0.61 (95%CI 0.43, 0.87). Although the initial prognosis was worse for CNS PNET compared to medulloblastoma, for those who survived 3 years from diagnosis, survival probabilities for the next five years were similar in both groups (85% for medulloblastoma and CNS PNET) 

Survival of childhood acute lymphoid leukaemia in Yorkshire by clinical trial era, 1990-2011

(van Laar et al, 2015)

This study described gender differences in survival by clinical trial era for children with acute lymphoid leukaemia (ALL) enrolled into UKALLXI, ALL97/99 or UKALL2003. For males, there was a non-significant improvement in survival for ALL97/99 (hazard ratio (HR) = 0.77; 95% confidence interval (CI) 0.43-1.42) and a significant improvement for UKALL2003 (HR = 0.50; 95%CI 0.25-0.99) compared to UKALLXI. For females, survival was significantly improved for ALL97/99 (HR = 0.33; 95%CI 0.14-0.78), and non-significantly improved for UKALL2003 (HR = 0.51; 95%CI 0.25-1.08) compared to UKALLXI. 

Cardiovascular Late Effects 

(van Laar et al, 2014)

Amongst those diagnosed with cancer under the age of 30 in Yorkshire since 1990, 3.6% of individuals had at least one cardiovascular related hospital admission 5-years or more beyond diagnosis. Compared to the general age and sex matched population in Yorkshire, cardiovascular hospitalisations for children surviving a cancer diagnosed under the age of 15 were 3-fold higher overall. For young adults surviving cancer diagnosed between 15 and 29 years of age, increased rates of cardiovascular hospitalisations were limited to ‘pericardial disease’, ‘cardiomyopathy and heart failure’, ‘pulmonary heart disease’, ‘hypertension’ and ‘conduction disorders’. 

Hospitalisation rate ratios and 95% confidence intervals comparing cardiovascular late effects amongst cancer survivors to the general population by age at diagnosis (for all cancer diagnosis in Yorkshire between 1991 and 2006)

Cvles yorkshire cancer specalist figure 2