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Background: 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.Methods: 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).Results: 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.Conclusions: 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. [ABSTRACT FROM AUTHOR]

Background: Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services.Methods: The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships.Results: Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson's Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9-88 MND, 3-25 Parkinsonism, and 0-5 MS).Conclusions: This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness. [ABSTRACT FROM AUTHOR]

Background: Geographical accessibility is important in accessing healthcare services. Measuring it has evolved alongside technological and data analysis advances. High correlations between different methods have been detected, but no comparisons exist in the context of palliative and end of life care (PEoLC) studies. To assess how geographical accessibility can affect PEoLC, selection of an appropriate method to capture it is crucial. We therefore aimed to compare methods of measuring geographical accessibility of decedents to PEoLC-related facilities in South London, an area with well-developed SPC provision. Methods: Individual-level death registration data in 2012 (n = 18,165), from the Office for National Statistics (ONS) were linked to area-level PEoLC-related facilities from various sources. Simple and more complex measures of geographical accessibility were calculated using the residential postcodes of the decedents and postcodes of the nearest hospital, care home and hospice. Distance measures (straight-line, travel network) and travel times along the road network were compared using geographic information system (GIS) mapping and correlation analysis (Spearman rho). Results: Borough-level maps demonstrate similarities in geographical accessibility measures. Strong positive correlation exist between straight-line and travel distances to the nearest hospital (rho = 0.97), care home (rho = 0.94) and hospice (rho = 0.99). Travel times were also highly correlated with distance measures to the nearest hospital (rho range = 0.84-0. 88), care home (rho = 0.88-0.95) and hospice (rho = 0.93-0.95). All correlations were significant at p < 0.001 level. Conclusions: Distance-based and travel-time measures of geographical accessibility to PEoLC-related facilities in South London are similar, suggesting the choice of measure can be based on the ease of calculation. [ABSTRACT FROM AUTHOR]

Background: Multiple myeloma, the second most common haematological cancer, remains incurable. Its incidence is rising due to population ageing. Despite the impact of the disease and its treatment, not much is known on who is most in need of supportive and palliative care. This study aimed to (a) assess symptom severity, palliative care concerns and health-related quality of life (HRQOL) in patients with multiple myeloma, and (b) to determine which factors are associated with a lower quality of life. We further wanted to know (c) whether general symptom level has a stronger influence on HRQOL than disease characteristics.Methods: This multi-centre cross-sectional study sampled two cohorts of patients with multiple myeloma from 18 haematological cancer centres in the UK. The Myeloma Patient Outcome Scale (MyPOS) was used to measure symptoms and concerns. Measures of quality of life included the EORTC QLQ-C30, its myeloma module and the EuroQoL EQ-5D. Data were collected on socio-demographic, disease and treatment characteristics and phase of illness. Point prevalence of symptoms and concerns was determined. Multiple regression models quantified relationships between independent factors and the MyPOS, EORTC global quality of life item and EQ5D Index.Results: Five-hundred-fifty-seven patients, on average 3.5 years (SD: 3.4) post-diagnosis, were recruited. 18.2 % had newly diagnosed disease, 47.9 % were in a treatment-free interval and 32.7 % had relapsed/progressive disease phase. Patients reported a mean of 7.2 symptoms (SD: 3.3) out of 15 potential symptoms. The most common symptoms were pain (72 %), fatigue (88 %) and breathlessness (61 %). Those with relapsed/progressive disease reported the highest mean number of symptoms and the highest overall palliative care concerns (F = 9.56, p < 0.001). Factors associated with high palliative care concerns were a general high symptom level, presence of pain, anxiety, low physical function, younger age, and being in the advanced stages of disease.Conclusion: Patients with multiple myeloma have a high symptom burden and low HRQOL, in the advanced and the earlier stages of disease. Identification of patients in need of supportive care should focus on assessing patient-reported outcomes such as symptoms and functioning regularly in clinical practice, complementary to traditional biomedical markers. [ABSTRACT FROM AUTHOR]

Background: Strategies in many countries have sought to improve palliative care and reduce hospital deaths for non-cancer patients, but their effects are not evaluated. We aimed to determine the trends and factors associated with dying in hospital in two common progressive respiratory diseases, and the impact of a national end of life care (EoLC) strategy to reduce deaths in hospital.Methods: This population-based observational study linked death registration data for people in England dying from chronic obstructive pulmonary disease (COPD) or interstitial pulmonary diseases (IPD). We plotted age- and sex-standardised trends, assessed during the pre-strategy (2001-2004), first strategy phase (2004-2008), and strategy intensification (2009-2014) periods, and identified factors associated with hospital death using multiple adjusted proportion ratios (PRs).Results: Over 14 years, 380,232 people died from COPD (334,520) or IPD (45,712). Deaths from COPD and IPD increased by 0.9% and 9.2% annually, respectively. Death in hospital was most common (67% COPD, 70% IPD). Dying in hospice was rare (0.9% COPD, 2.9% IPD). After a plateau in 2004-2005, hospital deaths fell (PRs 0.92-0.94). Co-morbidities and deprivation independently increased the chances of dying in hospital, with larger effects in IPD (PRs 1.01-1.55) than COPD (PRs 1.01-1.39) and dose-response gradients. The impact of multimorbidity increased over time; hospital deaths did not fall for people with two or more co-morbidities in COPD, nor one or more in IPD. Living in rural areas (PRs 0.94-0.94) or outside London (PRs, 0.89-0.98) reduced the chances of hospital death. In IPD, increased age reduced the likelihood of hospital death (PR 0.81, ≥ 85 versus ≤ 54 years); divergently, in COPD, being aged 65-74 years was associated with increased hospital deaths (PR 1.13, versus ≤ 54 years). The independent effects of sex and marital status differed for COPD versus IPD (PRs 0.89-1.04); in COPD, hospital death was associated with being married.Conclusions: The EoLC strategy appeared to have contributed to tangible reductions in hospital deaths, but did not reach people with multimorbidity and this gap widened over time. Integrating palliative care earlier in the disease trajectory especially in deprived areas and cities, and where multimorbidity is present, should be boosted, taking into account the different demographic factors in COPD and IPD. [ABSTRACT FROM AUTHOR]