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Peer-reviewedCC BY 4.0The British Journal of General Practice

Does ethnicity affect primary palliative care identification and coding? An observational retrospective cohort study

  • Gemma Clarke1
  • Farag Shuweihdi2
  • Samuel D Relton3
  • Sophie Anne Trotter4
  • Jamilla Akhter Hussain5
  • Matthew Allsop1
  • Jonathan Koffman6
  • Michael I Bennett1
  • Sarah Mitchell1
  • Lucy Ziegler1
6 affiliations
  1. 1St Gemma's Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  2. 2School of Dentistry, Faculty of Medicine and Health, University of Leeds, Leeds, UK
  3. 3Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, UK
  4. 4University of Sheffield, Sheffield, UK
  5. 5Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK
  6. 6Wolfson Palliative Care Research Centre, University of Hull, Hull, UK
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Abstract

Background: Primary palliative care is symptom support and care for people with life-limiting illnesses incorporated within standard primary care. Early identification of needs is recommended best practice. There is limited research concerning ethnicity and primary palliative care identification and coding.

Aim: To explore associations between ethnicity and primary palliative care identification and coding.

Design and setting: A retrospective cohort study of deceased patients in England utilising anonymised primary care data extracted in February 2022.

Method: Multilevel logistic regression was used to examine associations between ethnicity and primary palliative care records. Cox regression was used to assess time from first record to death. Differences between first palliative care codes were examined using χ2 tests.

Results: A total of 200 876 patients were included; 32.30% (n = 64 887) had a primary palliative care record. Multilevel logistic regression (n = 64 887) showed no statistically significant association between ethnicity and identification after adjustment for age, sex, frailty, deprivation, and diagnosis. After adjustment, a mixed-effects Cox proportional hazards model (n = 58 681) indicated: compared with patients from White groups, patients from Asian (hazard ratio [HR] 0.944, 95% confidence interval [CI] = 0.891 to 0.999, P = 0.040) and Black, African, and Caribbean groups (HR 0.925, 95% CI = 0.862 to 0.992, P = 0.028) survived significantly longer; and patients from ‘Other’ groups had significantly shorter survival (HR 1.136, 95% CI = 1.046 to 1.234, P = 0.002). Patients from ethnic minority groups were significantly (P<0.001) more likely to have a first record of specialist palliative care compared with White groups.

Conclusion: This study found no statistically significant association between ethnicity and primary palliative care identification after adjustment. However, differences were observed in survival and first palliative care activity. To ensure and monitor equitable access, ongoing improvements in palliative care identification and audits of data quality are required.

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Cite

BibTeXRIS
BibTeX
@article{clarke2026does,
  title = {{Does ethnicity affect primary palliative care identification and coding? An observational retrospective cohort study}},
  author = {Gemma Clarke and Farag Shuweihdi and Samuel D Relton and Sophie Anne Trotter and Jamilla Akhter Hussain and Matthew Allsop and Jonathan Koffman and Michael I Bennett and Sarah Mitchell and Lucy Ziegler},
  journal = {The British Journal of General Practice},
  year = {2026},
  month = jul,
  doi = {10.3399/bjgp.2025.0602},
  url = {https://doi.org/10.3399/bjgp.2025.0602},
  note = {CC BY 4.0},
}
RIS
TY  - JOUR
TI  - Does ethnicity affect primary palliative care identification and coding? An observational retrospective cohort study
AU  - Gemma Clarke
AU  - Farag Shuweihdi
AU  - Samuel D Relton
AU  - Sophie Anne Trotter
AU  - Jamilla Akhter Hussain
AU  - Matthew Allsop
AU  - Jonathan Koffman
AU  - Michael I Bennett
AU  - Sarah Mitchell
AU  - Lucy Ziegler
PY  - 2026
DA  - 2026/07/28
JO  - The British Journal of General Practice
DO  - 10.3399/bjgp.2025.0602
UR  - https://doi.org/10.3399/bjgp.2025.0602
AB  - Background: Primary palliative care is symptom support and care for people with life-limiting illnesses incorporated within standard primary care. Early identification of needs is recommended best practice. There is limited research concerning ethnicity and primary palliative care identification and coding.  Aim: To explore associations between ethnicity and primary palliative care identification and coding.  Design and setting: A retrospective cohort study of deceased patients in England utilising anonymised primary care data extracted in February 2022.  Method: Multilevel logistic regression was used to examine associations between ethnicity and primary palliative care records. Cox regression was used to assess time from first record to death. Differences between first palliative care codes were examined using χ2 tests.  Results: A total of 200 876 patients were included; 32.30% (n = 64 887) had a primary palliative care record. Multilevel logistic regression (n = 64 887) showed no statistically significant association between ethnicity and identification after adjustment for age, sex, frailty, deprivation, and diagnosis. After adjustment, a mixed-effects Cox proportional hazards model (n = 58 681) indicated: compared with patients from White groups, patients from Asian (hazard ratio [HR] 0.944, 95% confidence interval [CI] = 0.891 to 0.999, P = 0.040) and Black, African, and Caribbean groups (HR 0.925, 95% CI = 0.862 to 0.992, P = 0.028) survived significantly longer; and patients from ‘Other’ groups had significantly shorter survival (HR 1.136, 95% CI = 1.046 to 1.234, P = 0.002). Patients from ethnic minority groups were significantly (P<0.001) more likely to have a first record of specialist palliative care compared with White groups.  Conclusion: This study found no statistically significant association between ethnicity and primary palliative care identification after adjustment. However, differences were observed in survival and first palliative care activity. To ensure and monitor equitable access, ongoing improvements in palliative care identification and audits of data quality are required.
SN  - 0960-1643
SN  - 1478-5242
ER  -