Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer. Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N = 12,774) were extracted from the death registration database of the Office for National Statistics (ONS). Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993–2000 to 13 % in 2005–2014, and home deaths fluctuated at around 40 %. Those aged 0–19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23–1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18–0.75, hospice: 0.04–0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76–0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time. Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.
The role of age as a prognostic factor has been examined in single institutional studies and in larger data sets from the SEER database, showing a survival advantage for younger versus adult patients with synovial sarcoma (SS). To further assess the role of age, socioeconomic status and other prognostic factors on outcome for SS, we analysed a contemporary all-age population-based cohort of patients with SS registered in England. The data on 1318 synovial sarcomas diagnosed in England between 1985 and 2009 were retrospectively analysed for incidence, and the effect of age, patient characteristics and deprivation on outcome using both univariate and multivariate analysis. The incidence of SS increased to 1.4 per million over the time period, the numbers diagnosed in patients under 10 years of age were small. The site or incidence of metastases did not vary between age groups. There were, however, significant differences (p < 0.05) in the 5-year relative survival rates between patients aged 0–19 years and those ≥20 years of age, 76 % and 53 % respectively. Survival was better in localised tumours at an extremity site. In multivariate analysis higher mortality occurred in older patients, non-extremity site, presence of metastases, female adults and a higher deprivation score. Synovial sarcoma in children/teenagers compared with adults, have a similar clinical presentation in this population-based series, but a superior outcome. The finding of socioeconomic deprivation affecting outcome in SS needs further exploration in a complete and contemporary dataset, where all prognostic variables are present.