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This study was designed to assess the overall morbidity burden of survival from central nervous system (CNS) tumours and its impact on return to a normal lifestyle. School behaviour and health status of 27 children after treatment for CNS tumours, of 25 of their school-aged siblings, plus age- and sex-matched controls is reported. Spinetta school behaviour, Lansky play-performance and Health Utilities Index (mark II and III) assessments have been made. Patients had reduced mobility and increased pain levels. They demonstrated a reluctance to participate in organized physical activities. Impaired cognition, emotion and self-esteem were reported. They worried more than controls but attended school willingly, interacted normally with their peers and viewed the future confidently. Their siblings were reluctant to express openly concern for others or feelings of joy. Teachers were reliable proxies for most attributes, notable exceptions being speech and emotion. This is the first study to have assessed the school behaviour of a cohort solely composed of survivors of childhood CNS tumours. The good social reintegration is reassuring and likely to reflect a high level of psychosocial support. However, the results presented identify these young people as a 'special educational needs' group as defined by the 1981 and 1993 Education Acts.

Background/objectivesSurvivors of children’s and young people’s cancer are known to have an increased risk of cognitive difficulties compared to the general population, however less is known about emotional and behavioural problems. A recent systematic review highlighted the lack of consensus regarding the psychiatric needs of these patients. We aimed to further explore the prevalence of psychiatric disorder in long-term survivors of children’s and young people’s cancer.MethodsCancer registration records from a regional population-based registry of children’s and young people’s cancer in Yorkshire were electronically linked with the Hospital Episode Statistics Mental Health and Learning Disabilities Data Set (MHLDDS) covering all admissions in England between 2005 and 2016. The analysis was limited to those aged 0–29 years at diagnosis between 1974 and 2012; we excluded those diagnosed less than 5 years ago to ensure that patients who required psychological support during their acute treatment were not included.ResultsWe had registry data for 8092 patients who had survived a minimum of 5 years following a diagnosis of childhood or young adult cancer. Of these, 4.36% had contacts recorded on the Mental Health and Learning Disabilities Data Set. Female survivors (5.36%) were more likely to have mental health contacts than males (4.51%), although this was not statistically significant (p>0.05). Survivors diagnosed between the ages of 15 and 29 (6.24%) were significantly more likely to have mental health contacts than those diagnosed at 14 or younger (3.78%; p<0.001). Lymphoma survivors (5.79%) were more likely to have mental health contacts than leukaemia survivors (3.74%; p=0.006) or non-CNS solid tumour survivors (4.39%, p=0.001) but not CNS tumour survivors (4.97%; p>0.05).DiscussionThe increased number and proportion of patients diagnosed in the 15–24 age bracket who went on to develop mental health problems compared to those aged 0–14 emphasises the unique needs of this cohort. Further work will investigate the risks of mental health contact according to ethnic group, treatment modality and socio-economic status and seek additional mental health consultation data from linked primary care records.

BackgroundThe 10 year survival estimates for children aged 0–14 years diagnosed with leukaemia have increased from 23% during the early 1970s to 81% for 2001–2005. Statistical cure models offer an alternative approach to examining survival by simultaneously estimating the proportion of patients cured and the survival of those ‘uncured’. The proportion cured is defined as the proportion of patients as a group for whom there is no excess mortality compared to the general population. The aims of this study were to estimate the cure proportion for childhood leukaemia and examine trends by clinical prognostic risk factors. Trends in relapse free survival were also examined.MethodsChildren aged 0–17 diagnosed with leukaemia between 1990 and 2009 were extracted from the Yorkshire Specialist Register of Cancer in Children and Young People (n=583). Flexible parametric cure models were used to estimate cure proportions and median survival times (MSTs) of those ‘uncured’ by age at diagnosis, sex, diagnostic subtype, white cell count (WCC), and period of diagnosis. A further cure model based on relapse free survival and a competing risk model for relapse with death as a competing risk were also fitted to examine patterns of relapse.ResultsThe standardised (adjusting for age, sex, subtype and WCC) cure proportion increased from 0.63 (95%CI: 0.55–0.70) for those diagnosed between 1990 and 94 to 0.83 (95%CI: 0.75–0.88) for those diagnosed 2005–2009. Over this same time period the MST of the uncured remained around 2 years. There were significant differences in cure proportions by age, subtype and WCC, and differences in MST by age and subtype. Models based on relapse free survival found that the proportion cured increased from 0.45 (95%CI: 0.38–0.53) to 0.78 (95%CI: 0.71–0.84) and the MST to relapse or death remained between 1.5–1.7 years. The risk of relapse decreased over time (Hazard ratio 0.18 (95%CI: 0.10–0.31) for 2005–2009 compared to 1990–1994).ConclusionThese results demonstrate that the proportion of patients cured, defined either by overall survival or relapse free survival, has increased substantially. There was no change in the median survival time of the uncured group during this time period, however, the risk of relapse has decreased. Cure models provide an alternative and clinically informative method to assess trends in survival for cancer patients.

BackgroundMen with localised prostate cancer have a number of treatment options. Treatments carry associated benefits and side- and late-effects. The Life After Prostate Cancer Diagnosis study is a UK-wide survey of men 18–42 months post-diagnosis of prostate cancer. The survey included treatment questions, the Decision Regret Scale (DRS) and a single item on decision-making participation. The aim of this sub-study is to explore the association of decision regret with prostate cancer treatment and patient perception of participation in decision making.MethodsThe English arm of the survey achieved a 60.3% response rate (30 465 respondents). Men diagnosed with stage 1–3 disease were included in this sub-study (n=16,808). Descriptive statistics were used to explore associations between DRS scores (0–100), self-reported treatments and perceived participation in decision-making.Results12 600 (75.0%) men completed the DRS. Due to the skewed nature of the data, decision regret was categorised as ‘None’ (score=0; 36.5%), ‘Low’ (score=5–20; 31.6%) and ‘High’ (score=≥25; 31.8%). Levels of regret were lowest in men who underwent brachytherapy alone and surgery alone (25.8% and 27.5% respectively reporting ‘High’ regret). Men who received combination therapy (e.g. radiotherapy and hormones) reported higher levels of regret compared to men having a single therapy (34.8% vs. 28.3% reporting ‘High’ regret). 28.6% of men on active surveillance reported a high level of regret. 74.2% of men said their views were definitely taken into account in treatment decisions: 22.6% of these reported high regret. 2.8% of men said their views were not taken into account; 62.8% reported high regret.ConclusionThese preliminary analyses show a strong association between perceived involvement in treatment decision making and subsequent decision regret in men with prostate cancer. Levels of regret also vary according to the type of treatment received. Interestingly, men on active surveillance who receive no treatment report similar levels of regret to those who undergo surgery. Further analysis will investigate the impact of patient characteristics and functional outcomes (urinary, bowel and sexual) on levels of regret.