Title: Why are people with lower socioeconomic position more likely to die in hospital? A study of exposures and mediators using nationally representative data from the Census longitudinal study
Funder: Marie Curie

Abstract: Background Most people prefer to avoid hospital admissions at the end of life, yet hospitalisation and death in hospital is common. There is consistent evidence of a social gradient in place of death, the more deprived a person is the more likely they are to die in hospital. The reasons underlying this social inequality are not well understood. The aim of this study is to investigate housing quality, social support, and health, as potential mediators of the relationship between socioeconomic position and death in hospital, and to evaluate moderation of the relationships by age and ethnicity. Methods An observational study using secondary analysis of data from the Office for National Statistics Longitudinal Study (ONS LS) for England and Wales. The ONS LS has rarely been used to study end-of-life, yet it contains rich social data collected in the national Census linked to vital events data including death registration for a 1% nationally representative sample of the population in England and Wales. Participants are deceased ONS LS cohort members aged 18 and above who completed the Census in England or Wales in 2011 and died within 12 months (approximate n=5000). The outcome is death in hospital (versus death at home, hospice or care home), the exposure is area-based income deprivation. The three mediators are housing quality (a measure of overcrowding, living in shared/non-self-contained dwelling, and access to central heating), availability of informal caregiving support (based on household composition and the health of the primary co-resident), and self-reported long-term health problem or disability. The mediators will be modelled simultaneously using generalised structural equation models (SEM) to estimate the direct effect of the exposure on the outcome and the indirect effect through the potential mediators. The final model will be compared for different ethnic groups and the main effects will be plotted across the age range to test for moderation by age. Impact and dissemination This study harnesses the momentum created by the co-PI’s (Davies) PhD fellowship on the topic of socioeconomic inequalities in end-of-life care. It builds on two high-impact publications, a systematic review and meta-analysis (PLOS Med) and a mediation analysis (The Lancet Public Health). The long-term goal for this research is to reduce existing social inequalities in end-of-life care. This study will contribute new knowledge on social inequality at the end of life, we will use this evidence to raise awareness amongst health care professionals, policy makers and researchers working in end-of-life care. The study will grow skills and capacity to work with Census data to understand the end of life, the analysis will be repeatable for the 2021 Census when this becomes available in the ONS LS in late 2023. Members of the research team are also PI (Sleeman) and co-app (Murtagh) on the Marie Curie funded ‘Better End of Life Project’ that includes an ambitious programme of public and policy engagement. This project will benefit from these existing mechanisms for impact and feed into the rolling programme of policy recommendations seeking to improve end-of-life care and make access to care more equitable. PPI This study has been designed in consultation with a PPI member and PPI is planned throughout the project to assist with planning the analysis and interpreting the results. A full day workshop with 10 to 12 PPI members will be held to plan dissemination, create lay summaries and identify priorities for future work. We will recruit PPI members from diverse communities to ensure representation from marginalised groups including people from ethnic minorities, people with disabilities and people on a low income.

Lay abstract: Background We know that most people prefer to avoid going to hospital at the end of life. We also know that social factors influence the care people receive. Sadly, people who live in more deprived areas are much more likely to die in hospital than people who live in less deprived areas. We know very little about why this is the case. Low income, housing quality and living alone are likely to be important to the care people receive at the end of life. The aim of this study is to understand how social factors influence where a person dies. We will also look at whether health, age, and ethnicity influence death in hospital. Plan for the research No new data will be collected for this study, instead we will use the information from the national Census forms to tell us about people’s living conditions and social situations. For people who have died, their Census record is linked to their death certificate record that contains information on place of death. The anonymous data (names and addresses are removed) is made available to researchers for a small (1%) sample of the population in England and Wales. We expect around 5000 people to be included in this study. Dissemination and public involvement The goal for this work is to create a better understanding about how social factors influence care at the end of life and to raise awareness amongst health care professionals, policy makers and other researchers. We will meet with a group of 6 PPI members to help plan and prioritise the analysis and interpret the results. At the end of the project, we will have a whole day workshop with 10 to 12 PPI members to produce lay summaries and plan the dissemination

Research activity codes: 2.3 PSYCHOLOGICAL, SOCIAL AND ECONOMIC FACTORS;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE