End of life care outcomes for adults with serious mental illness

King’s College London (KCL) requires the data necessary for its research project ‘End of Life Care Outcomes for Adults with Serious Mental Illness (SMI)’.

The aim of this work is to explore the end of life care circumstances of adults with a diagnosis of serious mental illness (SMI). End of life care outcomes are measured by hospital admissions and A&E visits at the end of life and place of death. The project aims to achieve a clear picture of where patients with SMI die and their health care utilisation at end of life and assess what demographic and/or clinical factors are associated with place of death in this patient group. The objectives are as follows:

• To describe the acute care service use (including hospital admission, the length of hospital stay, A&E visit) in the last year of life, and place of death in people with SMI

• To evaluate factors associated with acute care service use and place of death in those with SMI and their relative importance

• To explore the relationship of the acute care service use and place of death.

This project is in the public interest as KCL believes it is making a valuable contribution to science and, with the results, KCL hopes to demonstrate whether or not patients with SMI face inequalities in care at end of life and also to understand the factors that may contribute inequities in SMI . Such knowledge would be massively beneficial to the public (patients, policy makers, health care practitioners etc) and would provide evidence for intervention.

Ethical approval has been obtained. There is minimal risk of harm as data will be pseudonymised, stored securely and summary data only will be reported in dissemination.

The data requested are required to meet the following three aims:

1] To describe the acute care service use (including hospital admission, the length of hospital stay, A&E visits) in the last yearof life, and place of death in people with SMI.

To meet this aim KCL requires the following items from HES data: the dates of admission and discharge to generate measures of number of admissions/A&E visits and the length of hospital stays in the last year of life, and mortality data, which includes individuals’ place of death. Place of death can be summarised as hospital, home, hospice, care home and other, if the place of death could potentially identify an individual (e.g. a residential address). These data will enable KCL to describe the outcomes of interest for this project.

2] To evaluate factors associated with acute care service use and place of death in those with SMI and their relative importance.

This aim will identify the demographic and clinical factors associated with the outcomes of interest: acute care at end of life and place of death. Patient demographics and clinical factors, available from MHDS and mortality data, are required to explore associations with the outcomes derived from HES and mortality data.

3] To explore the relationship between acute care service use and place of death.

To meet this aim, KCL will use the derived measures of number of admissions and length of hospital stay and number of A&E visits (generated from HES data) and the categorical measure of place of death (from mortality data) to explore bivariate associations between these outcomes.

One member of the research team applied for and secured funding from KCL to undertake this project. This was to continue and expand upon previous working carried out at a local level. Previous work by the research team has explored end of life care outcomes in adults with SMI in a south London dataset (Wilson et al, 2019*). This work identified inequalities in end of life care in this localised patient group; the purpose of the proposed project is to assess end of life care at a national level.

The research team have also conducted a systematic review :Wilson, R., Hepgul, N., Higginson, I. J., & Gao, W. (2019, October 14). End-of-life care and place of death in adults with serious mental illness:

A systematic review and narrative synthesis. Palliative Medicine. https://doi.org/10.1177/0269216319867847 (unpublished, currently under review) assessing the current evidence base for the end of life care outcomes for people with SMI. This review found that more focused, rigorous research is needed in this area.

*Wilson et al. 2019. “Place of Death and Other Factors Associated with Unnatural Mortality in Patients with Serious Mental Disorders: Population-Based Retrospective Cohort Study.” BJPsych Open 5(2): e23.

This project builds on an ongoing project assessing end of life care in patients with SMI in South London, which uses a linked dataset from the South London and Maudsley Trust. For clarity, this project will not involve linkage with or any other use of data from that other project.

Under this Agreement, KCL requires data from a one-year time period. If this project proves an efficient way of demonstrating end of life care outcomes in patients with SMI and highlights inequalities in this population, the research team may request data from a long period of time to perform longitudinal analysis and explore time trends. The results of this project may contribute to/inform the development of a post-doctoral fellowship application.

This is a cross-sectional observational study including a cohort of people with SMI. The sample are adults (18 years+) who died with a diagnosis of schizophrenia, schizotypal or delusional disorder (ICD 10 F20-F29), bipolar disorder (F31), depressive episode (F32) or recurrent depressive disorder (F33). There will not be a control group.

KCL requires Hospital Episode Statistics (HES) and mortality data for use in the study, End of Life Care Outcomes for Adults with Serious Mental Illness. Linked data for eligible observations are required at an individual level for individuals that died within one calendar year (the latest year for which all linked data are available). Data will be pseudonymised.

Mortality data are required to assess place of death and cause(s) of death. HES data are required to identify patients with a diagnosis of SMI (defined above) who died within the HES 2018/19 year. HES data (admissions and A&E) are also required to measure acute service use in the last year of life. Data are required for one year to measure admissions and A&E visits in the last year of life, the time frame considered to capture health care use at the end of life.

National data are required as this proposed project is a continuation of a previous project that explored end of life care outcomes in patients with SMI in south London (data were provided by a south London mental health trust, SLAM). National data are required to expand on this localised project. Data are requested for patients with the following psychiatric diagnoses: schizophrenia, schizotypal or delusional disorder, bipolar disorder, depressive episode or recurrent depressive disorder.

Date of birth fields are to be provided in Month/Year format for pseudonymisation.

Data are requested only for eligible individuals (those with an eligible diagnosis). KCL are requesting data for just individuals who died within HES year 2018/19.

KCL is the only organisation involved in this study and the sole organisation responsible for determining how and why the data will be processed. All researchers involved in the study are employed by KCL as research or academic staff.

NHS Digital will create the cohort using HES filters and extract relevant records and pseudonymise the data.

There will be a single flow of linked and pseudonymised record level data from NHS Digital to King’s College London (KCL), with pseudonymised ID and no identifying data. There will be no further flow of data.

KCL will be the sole organisation involved in processing the data. As per the application purpose section, researchers at KCL will manage the storage, cleaning, analysis and interpretation of the data.

The data will not be linked with any record level data or be matched with publicly available data. There will be no requirement or attempt to re-identify individuals from the data.

Data will only be accessed by individuals within the Cicely Saunders Institute, KCL who have authorisation from NHS Digital to access the data for the purpose described, all of whom are substantive employees of KCL.

KCL will store the data on a secure server at the Cicely Saunders Institute, KCL, which can only be accessed within the department (located at Denmark Hill campus, KCL) by researchers named on the project. Data analysis will be conducted by role based access, limited to researchers working in the study team, on the departmental computer on which the data are stored (ie, analysis will not be conducted remotely). Data will be accessed by employees on a secure server on a desktop computer within the department (Cicely Saunders Institute, KCL).

The data will not be made available to any third parties.

Results will be presented at an aggregate level in research outputs. All data will remain anonymous. Small cell counts will be suppressed (N<10).

The following outputs will be produced:

Progress reports will be provided to the funders (King’s College London) throughout the project. These will describe the progress of the work (e.g. having received the data, analysis, manuscript writing) and will not divulge any data/results.

The first output will be a short report, published in a psychiatric journal, by the end of the year (April 2021). This output will report descriptive statistics for the cohort, including place of death and cause of death and other demographics.

The main results of the paper will be published in a psychiatric journal in 2020. This paper will report the factors (demographic and clinical) associated with place of death in patients with SMI. It is hoped that this will demonstrate the pathways by which various demographic variables are associated with health care and end of life care. By publishing in a psychiatric journal, psychiatrists and mental health professionals are the target audience, thus the aim of this work and targeting this audience is to highlight the importance and needs for good end of life care in this vulnerable patient group.

Additional outputs will include abstracts of the main results to one or more of the following: the European Psychiatric Association in 2020, the European Association for Palliative Care in 2020 or the Society for Social Medicine 2020.

Results of the study will also be disseminated to patient and carer groups, including Mind and MQ Mental Health and to followers of the work of the Cicely Saunders Institute, through Twitter, PPI groups, etc. KCL will also write a policy brief, which will summarise the work and the main results in a policy brief and will be disseminated to relevant groups and individuals.

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

Dissemination in peer reviewed journals and at conferences and the dissemination of the results through the KCL network (which includes collaboration with the South London and Maudsley NHS Trust, Europe’s largest provider of mental health care) is intended to change policy and directly influence adult health care for adults with SMI.

Dissemination of results is in the public interest and the study team intend to use the data to show whether or not there are inequalities in care for people with SMI.

The study team will be submitting the results to open-access high impact journals. Open-access is crucial for dissemination of the study results as KCL hopes to reach as wide an audience as possible. Publishing in high impact journals is also important to represent the value of the work. The main target journal will be the British Journal of Psychiatry, as a high impact journal within the field of psychiatry (impact factor 5.9; 10 out of 142 for psychiatry) and the primary journal for psychiatrists in the UK. Failing publication in the British Journal of Psychiatry, alternative journals to consider would be The Lancet Psychiatry and the Journal of Psychiatric Research.

The results will be presented to psychiatrists and members of mental health teams at the Institute of Psychiatry at King’s and with other clinical teams. The study team will pursue opportunities to present the results at clinical forums, such as the European Psychiatry Association congress and the European Association of Palliative Care annual conference. The study team will produce policy briefs summarising the results of the study. These will be used to respond to any relevant calls for information put out by MPs, health care committees, task forces or special interest groups. The study team will proactively look for any individuals or groups (in policy) with an interest in mental health and health care. The study team will also disseminate the policy briefs at study days and events held in their department, which are regularly attended by policy makers.

The outputs (peer reviewed publications, presentations at scientific forums, policy brief) achieve the purpose of the project by disseminating the results KCL find from the data.

The benefits of the dissemination plan include targeting and reaching the most relevant individuals. Papers will be sent to psychiatry journals and abstracts to psychiatry and social science conferences. Policy briefs and results summaries will be shared with relevant charities and third sector groups.

The outputs from this project will show, for the first time as far as the study team are aware, what acute health care adults with SMI in the UK receive in the last year of life and where they die, demonstrating whether there are inequalities in place of death compared to the general population. KCL will also be able to show if other factors (e.g., age, diagnosis, gender, ethnicity) are associated with inequalities in health care access. This evidence is needed for change (in the provision of care for this patient group). The results. Through publishing in a psychiatry journal, health care professionals are more likely to see these results and be made more aware of the end of life care issues faced by their patients, this could help to change practice. If the results of the project are picked up by policy makers, they could potentially inform policy around the provision of end of life care for patients with SMI.

The benefits will be measured in several ways. First, the reach of the results will be measured by summarising and evaluating the dissemination of the work, including readership of the journal in which the results are published, number of downloads, online readers and retweets.

The approximate size of audiences to which the results are presented will be measured. Impact of the results will be measured initially by engagement with clinicians and policy makers. Raising awareness of end of life care in patients with SMI in clinicians (palliative care, psychiatry and general medicine), though not measurable, is an essential benefit for initiating change in the provision of end of life care for patients.

The goal of this work is to raise awareness of patients’ end of life care needs in clinicians working in psychiatry and to raise awareness of an underserved population (patients with SMI) in palliative care for relevant health care professionals. Discussion between partners and collaboration between palliative care and psychiatry will be an indicator of education and awareness of the project and research goals. It will be possible to measure direct benefit for patients when changes are made to reflect the increased awareness of the need for high quality end of life care, although this is likely to take time. These changes will include more focus of advanced planning for patients with SMI and recording end of life care preferences, less emergency care at end of life (which will be a marker of better end of life care planning) and more patients accessing high quality palliative care at the end of life. These outcomes will be measurable in future years when data are available to depict what end of life care patients are receiving. In future years, KCL will be able to perform time-trend analysis to explore if outcomes have improved over time.

KCL hopes that its research ultimately improves end of life care for people with SMI in 2014 0-3.3% of the population in England are estimated to have a diagnosis of SMI (roughly 1.0m people). This is an under-researched area of health care provision. There are concerns that people with SMI have received worse health care at end of life and this work will demonstrate whether these patients experience health care inequality at the end of life. If the data shows that people with SMI have worse health care experiences, this provides evidence of inequality and support for improvement of services (including better end of life care) for patients with SMI. Change in provision of services or prioritisation of a vulnerable patient population is not possible without robust evidence to demonstrate need.

Due to disruptions from COVID-19 King's College London have been unable to continue their analysis and derive some of the yielded benefits/deliverables as per the initial plan. King's College London aimed to write a short report towards the end of December last year. However, this was not possible due to staff changes, It is hoped that as lockdown eases Kings College London will be able to carry out their planned analysis and put together a short report on or before April 2021.