What factors lead to palliative care patients being admitted to acute hospitals; can we design services to improve their support at home?

As part of the commitment to supportive & palliative care research the West Midlands Clinical Research Network Supportive & Palliative Care Research team conducted a study to ascertain the most important research questions for hospices in the West Midlands. The study identified the question, ‘What factors lead to palliative care patients being admitted to acute hospitals; can we design services to improve their support at home?’ as a top priority for research. Searching the published literature outlined the disadvantages of Emergency Department (ED) attendance for palliative care patients and it has been argued that frequent ED attendance and subsequent admission could be considered as inadequate management of palliative care patients, reflecting on substandard end of life care. A recent systematic review of the literature concluded that there was insufficient evidence as to why palliative patients are presenting in the emergency department. With an understanding of why patients present to the ED it may be possible to design interventions to support patients with palliative needs at home.

The purpose of this study is to find out why patients with palliative care needs come to Emergency Department (ED). Therefore, the study needs to quantify the symptoms and treatments provided to see what the biggest needs of the patients are when they present to ED. For example, this could be physical symptoms such as pain, shortness of breath or hypercalcemia. Quantifying and calculating percentage proportionality for different symptoms will allow researchers to see what support might be suitably provided in the community, in particular a patient’s own home in order to better support and eliminate suffering at an earlier stage.

Subsequently, the NIHR Clinical Research Network West Midlands provided funding for obtaining data on the first part of the question to quantify the issue and provide data for service redesign. Whilst this funding was awarded for 17/18, it has been confirmed by the UHCW NHS Trust that this has carried over to 18/19 i.e. to ensure that this important research can be completed.

Aim: Phase I: To explore factors leading to palliative care patients being admitted to acute hospitals in the West Midlands area and nationally.

Objectives:

• To determine how many patient admissions were related to palliative care needs in the years 2013 – 2016 in the West Midlands region and nationally.

• To determine the reasons for admission of the subset of palliative care patients identified by the specialist palliative care code Z515.

• To explore outcomes for the palliative care patients such as treatment given, length of stay and survival.

Therefore, the data required will be filtered to code Z515 (patients with specialist palliative care needs), and only consist of the specific fields required for the research (9% of possible APC fields, and 17% of possible A&E fields). Whilst these fields will allow the data to be filtered geographically, this will only contain the hospital code where the patient attended, and not the patient's home address.

Phase I will provide insights into the incidence of admission, reasons for admission and clinical outcomes of palliative care patients within the West Midlands and national trends. This study will lead to phase II.

Phase II: This phase will be a qualitative exploration of palliative care patients’ and carers’ perspectives on reasons for and experience of admission into an acute Trust. The protocol must be submitted for full ethical review and, as at April 2018, is already in progress.

The HES data requested will be used for phase 1 of the study only. Phase 1 constitutes quantitative analysis using the raw HES data, and Phase II constitutes qualitative analysis of patient and carer experiences. There will be no linkage of data within or between the phases, rather the use of both quantitative and qualitative analysis will provide a richer evidence base to inform the development of improved support services for palliative care patients.

The findings from Phase 1 and 2 will inform the development of appropriate interventions which will be tailored to meet the needs of the palliative patient population and the NHS.

The legal basis under GDPR for receiving and processing this data are:

Processing: General Data Protection Regulation Article 6 (1) (e) public task as the study team is contributing to the health and social care system and General Data Protection Regulation Article 9 (2) (j) as this release is for research purposes.

The data will not be used for commercial purposes, it will not be provided in record level form to any third party and it will not be used for direct marketing or shared in its original form with any third party other than staff at UHCW NHS Trust and a statistician at the University of Warwick. Processing of the HES data will take place at the University Hospitals Coventry and Warwick NHS Trust and The University of Warwick.

All decisions on processing of data will be made by research staff at UHCW and only advice regarding the statistical analysis will be sought from the statistician at the University of Warwick. The statistician would be able to give his expert opinion on the types of statistical tests required to analyse the data using the SPSS database. The statistician from the University of Warwick is based at UHCW NHS TRUST one day a month to provide statistical support to researchers, and advice and guidance on achieving the study goal.

The University Hospitals Coventry and Warwick NHS Trust is the sole data controller and also processes the data for this study. The software packages required to analyse the data (SPSS) is available to use at the University of Warwick as well as provide statistical support through trained statistician. Therefore, the University of Warwick will act as a joint data processor so that the relevant software packages can be used for statistical analysis as the Trust does not have these available for use.

The Data Controller has a responsibility to ensure they have in place appropriate contractual arrangements with the Data Processor(s).

All organisations party to this agreement must comply with the data sharing framework contract requirements, including those regarding the use (and purposes of that use) by “personnel” (as defined within the data sharing framework contract i.e. employees, agents and contractors of the data recipient who may have access to that data).

There will be no data linkage undertaken with NHS digital data provided under this agreement that is not already noted in the agreement.

Data will only be accessed and processed by substantive employees of University Hospitals Coventry and Warwickshire NHS Trust and will not be accessed or processed by any other third parties not mentioned in this agreement unless working under an Honorary Contract.

There will be no attempts made by University Hospitals Coventry and Warwickshire NHS Trust to re-identify individuals involved in this project as there is no requirement to do so.

Phase 1 of the study will involve the collection and analysis of pseudonymised HES data only. Phase II will be a qualitative exploration of patient and carer experience, for which the HES data will not be used. There will be no direct linkage between the HES data and the qualitative experience data.

The HES data obtained from NHS Digital will be managed in accordance with Data Protection Act 2018 and standard operating procedures at UHCW NHS Trust. Pseudonymised data will be received and stored by the research team on secure password protected computer at UHCW and accessed by authorised research team members for analysis.

All staff, including the statistician who is a substantive employee of the University of Warwick, and the lead researcher, who is a substantive employee of both organisations are substantive employees and will process HES data at the UHCW NHS Trust and at University of Warwick.

Descriptive analysis will be carried out to quantify different diagnosis that patients with palliative care present to emergency department. This will allow researchers to find out the major medical problems experienced by patients with palliative care needs.

Only aggregate data will leave UHCW NHS Trust. Small numbers will be suppressed in line with the HES analysis guide.

Pseudonymised data are required to enable calculation of benchmarked metrics on a per patient basis e.g. reason for admission into hospital such as pain control.

For clarity, this request is for non-identifiable, pseudonymised data on which descriptive statistics such as frequencies of outcomes will be undertaken.

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).

Individual patient identification is not required for the purpose described and therefore there will be no attempt or need to re-identify individuals. The data will not be linked with any other source.

The study team aim to use the data transform service and patient pathways for patients with palliative care needs. The redesigning of care pathways on behalf of CCGs requires access to activity data which is accurate and complete. HES data are the only source for this.

The analysed results will be disseminated in a report form to members of the palliative and supportive care research team, community palliative team, hospices, NHS trusts in the West Midlands area and academic support from Warwick University for development of interventions to support patients with palliative care needs. The results of the study will be published in a peer reviewed journal and access to HES data will be acknowledged. All outputs will contain only aggregate level data with small numbers suppressed in line with the HES analysis guide.

The findings will also be disseminated to lay people/the general public via the UHCW NHS Trust's Facebook page and Twitter account, and their Communications Team will also release a press release. In addition, the findings will be presented at the Hospice UK National Conference in Autumn 2020, the audience for which is very diverse, and includes lay delegates as well as palliative care specialists.

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

a) General Benefits

Utilising HES data will provide accurate information on the numbers and needs of palliative care patients going through Accident and Emergency Departments. Once these data are known, services will be designed to support patients in their home and hence strive to reduce anxiety and distress in patients with palliative care needs including end of life, as well as achieve the goal of preferred place of death. The redesigned pathways will lead to reduced admissions at acute trusts and consequently reduce pressure on emergency departments as most admissions occur via this route. UHCW NHS Trust will be presenting the resulting pathway redesign to the Trust A/E department, Hospice UK National Conference, publish in journal papers, trust website, trust board and depending on our findings changes will be implemented at 'UHCW first' and if the results show improvement in care for people with palliative care needs then these can then be taken to commissioners for wider implementation.

The research question, ‘what factors lead to palliative care patients being admitted to acute hospitals; can services be designed to improve their support at home?’ has not been asked before in the UK. This is new information requested and will be of direct benefit to the palliative care health sector as the information on the numbers and reasons for admissions to hospital (under Z515 code) elicited, will enable the palliative care teams to service redesign with the ultimate aim of reducing admissions to the acute sector (not always the optimal location for patients with palliative care needs).

UHCW, a large teaching Trust, had 120 inpatient admissions in one month under the Z515 code. It is estimated that at least 50% of these admissions could be successfully dealt with, with new approaches (intended service redesign). The potential benefit to the patients’ quality of life is huge if the service design stemming from the outputs is replicated in the hundreds of Type 1 A&E units in the UK.

b) Specific potential benefits dependent on results and directly related to the outputs:

i) Palliative care patients with all conditions admitted ‘appropriately’ for medical reasons (a list will be compiled from results of HES data search) - to have speedy referral to an acute palliative care team (similar to acute oncology service) to minimise any waiting in A&E

ii) if sufficient patients are found to be admitted for End of Life care with complex symptoms from HES data search, a joint post will be set up between the local hospice and the hospital to facilitate symptomatic care rapidly by the hospice inpatient or outreach team

iii) if patients are found to be admitted as they are not coping at home due to a lack of an informal carer, then an ‘accelerated service referral’ service could be set up to the specialist palliative care outreach on-call team and social workers

iv) Once numbers and reasons for admission for patients will palliative care needs are known, a virtual and triage palliative care service with a patient portal for patients to use at home instead of coming into A&E will be set up. Feedback to the patients where appropriate (immediate feedback to the patient for ‘severe’ needs). This is prevention of admissions for the group of patients identified by the HES data search who would be better served staying at home with specialist palliative care input.

c) Timescales

Service redesign is now expected to be in place by June 2021, carried out by the wider palliative care team, approved by University Hospitals Coventry and Warwickshire UHCW Trust Executive and rolled out firstly to other interested Trusts in West Midlands (by December 2021) and then to ‘early followers’ in UK-wide (by December 2022).

Not stated in the register.