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Palliative care symptoms and problems in a culturally and linguistically diverse population: large retrospective cohort study

Abstract

Objectives Migrant Australians with cancer have higher unmet needs and poorer health-related quality of life. Less is known about their palliative care experience. We aimed to assess comparative symptom distress and problem severity for culturally and linguistically diverse Australians with cancer in palliative care.

Methods This was a retrospective, consecutive cohort study using data from the Palliative Care Outcomes Collaboration, which routinely collects standardised symptom assessments nationally at point-of-care. Adults with a cancer diagnosis who died 01/01/2016–31/12/2019 were included. The presence/absence of patient-reported symptom distress and clinician-rated problem severity were compared between people who preferred English and people who preferred another language using logistic regression models. We also compared people who preferred English and the four most common non-English languages in the dataset: Chinese, Greek, Italian and Slavic.

Results A total of 53 964 people with cancer died within the study period, allowing analysis of 104 064 assessments. People preferring non-English languages were less likely to report symptoms (pain: OR=0.89 (0.84 to 0.94); all other symptoms except fatigue OR<1 and CIs did not contain 1). Except for family/carer problems (OR=1.24 (1.12 to 1.31)), linguistically diverse people were less likely to report problems. Variation was seen between non-English language groups.

Conclusions We did not find evidence of comparatively worse symptom distress or problem severity for nearly all scores for culturally and linguistically diverse Australians. Better symptom management or differential reporting may explain this. It is important to examine this further, including assessing differences within cultural and linguistic groups to ensure the delivery of high-quality palliative care.

  • cancer
  • symptoms and symptom management
  • cultural issues
  • terminal care
  • clinical assessment

Data availability statement

Non-identifiable extracts from PCOC’s longitudinal data can be released for use in researchafter approval of a formal application to PCOC. This includes for researchers who meet criteria for access to the PCOC data. The value of the PCOC data liesin its use. The PCOC group encourages the use of PCOC datasets for research and public benefit, while also protecting privacy and confidentiality.

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