Title: The role of ethnicity in opioid prescribing and health service use in the last three months of life: a population-based comparative cohort study of cancer patients
Funder: Department of Health and Social Care

Abstract: BACKGROUND In the UK, approximately 165,000 people die from cancer/year, a number expected to rise. Pain is very common among cancer patients, increasing to 80-90% at the end of life and if often very distressing. Relief from cancer pain is a top national priority for patients/families and a human right. Despite effective treatments, evidence of under-prescribing of pain medication is common but is not uniformly distributed across society. In the UK, we know from annual national surveys that cancer patients from Black, Asian and ethnicity diverse (BAED) communities are dissatisfied with how their pain is managed. No research has examined analgesic prescribing for pain across different ethnic groups at the end of life. Without answers, it s impossible to know where/what solutions are required. AIM To examine the relationship between ethnicity and community prescribing patterns of opioids among cancer patients towards the end of life in the UK. METHODS We will undertake a population-based cohort study using data from UK CPRD linked to HES and ONS of cancer patients diagnosed with lung, bowel, female breast and prostate cancers who died from 2011 to the latest available time point. We will classify opioids into two groups (weak opioids [level 2] and strong opioids [level 3]). A binary indicator for a patient receiving at least one prescription of Level 2 and Level 3 analgesics as the primary outcome to be examined. The primary outcome will also be defined using the number of prescriptions, average daily dose of opioids, cumulative dose and days of supply for sensitivity analysis. Explanatory variables include demographic characteristics and patient-level variables, e.g., cancer site, comorbidities, the time interval between cancer diagnosis and death, year of death. Self-reported ethnicity will be collapsed into five categories. Cluster-level variables (regions, practice-level socioeconomic status) will be measured by the Index of Multiple Deprivation. Our analysis will comprise three parts: main analysis to generate main results, sensitivity analysis to test for the robustness of results, and mechanistic exploratory analysis to explore the complex relationship between opioid prescribing, ethnicity and other variables of interest. TIMELINE Months 0-1: Establish Project Advisory Group, staff recruitment Months 2-5: Clean and harmonise data, descriptive analysis Months 6-9: Multiple regression analysis Months 9-11: Mechanistic exploratory analysis Months 9-11: Critical interpretation of data with PPI colleagues Months 11-12: Write up and report to the funder Month 12: Dissemination (publication preparation and NIHR ARC event) ANTICIPATED IMPACT/DISSEMINATION With our PPI colleagues, we will publish our findings and prepare lay summaries translated into five major ethnic languages spoken in the UK for patients, BAED cancer support groups, patient advice/support forums, national cancer patient/carer groups. We will work with national cross-NIHR Applied Research Collaborations (ARCs) Palliative and End-of-life Collaboration to convene a seminar for health professionals, patients/families, BAED cancer support charities and researchers to share our upstream findings and consider implications for clinical practice and research leading to interventions that can be evaluated. With PPI colleagues, we will produce a YouTube video hosted on the Cicely Saunders Institute YouTube channel summarising the seminar/consultative exercise.

Lay abstract: Many people with advanced cancer experience severe pain. When health professionals ask people about their pain and treat it, improvements are seen. Studies, mostly from the USA, show people with advanced cancer from Black, Asian and ethnically diverse (BAED) groups are sometimes prescribed fewer painkillers than others. This means many remain in pain. In the UK, we know from yearly surveys that people with cancer from BAED groups are unhappy with how their pain is treated compared to others. Our two BAED PPI members helped us find other people with cancer from BAED backgrounds or bereaved relatives of loved ones who died from cancer. They shared distressing stories about how their pain was managed. However, in the UK no research has examined if people with cancer from BAED groups are prescribed fewer painkillers than white people at the end of life. Without answers, it is impossible to know where or what changes are needed. What is this study planning to do? We want to study, for the first time in the UK, the painkillers prescribed to people with cancer at the end of life to find out if there are differences by ethnic group. What we will do With our PPI members, we will study databases called the Clinical Practice Research Datalink and Hospital Episode Statistics. They contain anonymised information for millions of people about their ethnicity, illnesses, GP visits, hospital and A&E admissions and medicines, including cancer painkillers. With these data, we will be able to find people with advanced cancer and which painkillers were prescribed to them. We will work out if there are differences in the type and number of painkillers prescribed to people from different BAED groups, along with other reasons that might explain this. Sharing what we learn and future work This study will find out if more or fewer painkillers are prescribed to people with cancer at the end of life from different ethnic groups in all settings (home, care homes, hospitals and hospices). With our PPI members, we will share what we find in a medical journal and YouTube for health professionals locally and nationally so they can learn and improve their care. This study will lead to a path to change improving understanding of prescribing cancer painkillers across different ethnic groups. Future work will include talking with people with advanced cancer from BAED backgrounds and especially those groups where we find that fewer painkillers have been prescribed than expected. We will also talk with health professionals about how they talk about and manage cancer pain among people from BAED backgrounds, especially those where we find fewer painkillers have been prescribed than expected, so we can find solutions that make a difference.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: CANCER AND NEOPLASMS