Does ethnicity affect the recognition of palliative care needs? An observational retrospective cohort study

Date of Approval: 
2021-06-10 00:00:00
Lay Summary: 
Palliative care helps provide patients with pain and symptom relief, particularly as people come towards the end of their lives. Access to palliative care is associated with good quality end of life care. However, some studies have shown that people from ethnic minority groups and non-cancer disease groups may not get the same access to these services. This study is based in England. The study will investigate the relationship between ethnicity and recognising a patient’s need for palliative care support. To do this, the research team will use a de-identified dataset taken from primary care (GP surgeries and district nurses etc.) records of patients who died between 2018-2020. This data will also be linked to de-identified hospital records data. “De-identified” means data that has had all identifiable markers such as name, date of birth, NHS number etc. removed. The research team will use the data to look for patterns in ethnic group, cancer and non-cancer diseases and whether a person has their need for palliative care support recognised. Other factors such as gender, age, non-cancer diseases, and measures of household income status will also be investigated. The findings from this study will show patterns in ethnicity, having cancer or a non-cancer disease, and the use of palliative care services. This information can be used by doctors and policy-makers to help improve services for ethnic minority groups.
Technical Summary: 
Timely access to palliative care is associated with improvements in symptom management and quality of life, and has been shown to reduce the unnecessary use of acute care. General Practitioners (GPs) play a key role in providing palliative care for patients in the community; such as care planning, coordination, and referrals to specialist services. However, some evidence indicates inequalities in provision; for those with nonmalignant disease, and for people from ethnic minority groups. This study will investigate the relationship between ethnicity and the recognition of palliative care needs for those with malignant and nonmalignant disease in England. The analysis will use de-identified routinely collected primary care data from the Clinical Practice Research DataLink (CPRD). A retrospective cohort of adult (18+) patients with completed ethnicity data, and a CPRD death date between (01/03/2018-to-29/02/2020) will be extracted. Extraction will include demographics, service utilisation, comorbidities and referrals. Records will be linked to Hospital Episode Statistics (HES) (inpatient/outpatient/acute) from the previous two years, including data on referrals and service utilisation. Records will also be linked to ONS death registration data and Index of Multiple Deprivation. A recognition of palliative care needs variable (yes/no) will be created by identifying one of the following factors: palliative care QOF registration; palliative referral in CPRD/HES; palliative care treatment/main specialty (HES). A binary ‘length of palliative care’ variable (early/late) will be created from death date and the date of the first recognition of palliative care need. Descriptive statistics and data visualisation will be used to describe and illustrate patterns. Multi-level logistic regression and survival analysis will be used to examine ethnic and malignant/nonmaligant differences in: recognition of need; timing; and location/site (primary/secondary/acute). Associated clinical and demographic factors will be explored, and subgroup analysis undertaken. Findings will identify areas of ethnic inequality which may be used to inform targeted interventions.
Health Outcomes to be Measured: 
Primary outcomes: 1. Recognition of palliative care need by ethnic group (yes/no), variable created from presence of one of the following: palliative care local GP registration using (QOF Quality and Outcomes Framework) in CPRD; a referral to Palliative Medicine in CPRD; a referral to Palliative Medicine in HES; Palliative Medicine main specialty treatment or consultant code in HES. 2. Timing of referral by ethnic group (early/late), variable constructed from date of first recognition of palliative care need (see above) to date of ONS date of death) in days. Secondary outcomes: 1. Healthcare setting recognising palliative care needs (primary care/secondary care/emergency care) by ethnic group 2. Other demographic and clinical associations for all outcomes.
Application Number: 

Gemma Clarke - Chief Investigator - University of Leeds
Gemma Clarke - Corresponding Applicant - University of Leeds
Farag Shuweihdi - Collaborator - Not from an Organisation
Michael Bennett - Collaborator - University of Leeds
Samuel Relton - Collaborator - University of Leeds
Sophie Trotter - Collaborator - NHS CALDERDALE CCG
Wei Gao - Collaborator - King's College London

HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation