Parkinson's Disease in minority ethnic groups: understanding phenotypical traits and differences in outcomes to inform pathways of care

Study type
Protocol
Date of Approval
Study reference ID
20_000142
Lay Summary

Parkinson's Disease (PD) is a common health condition of movement, associated with tremor, rigidity, freezing episodes and changes with body posture. There is very little data or firm conclusions on the relationship between ethnicity and PD. In Leicester, Leicestershire and Rutland (LLR), we have noted an underrepresentation of ethnic minority individuals in new referral and existing caseload numbers.

This study is designed to understand the patient characteristics of ethnic minority PD patients, draw comparisons to White European patients and utilise this crucial information to improve the patient pathway in LLR. We believe there may be differences in age, management of PD and other co-existing medical problems between the two groups. In addition, differences in outcomes by ethnicity and COVID-19 may also exist (ethnicity being a key risked factor for COVID-19 infection, hospitalisation and possibly death).

Technical Summary

The primary objective of this research is to understand whether differences exist in clinical presentation and referral patterns from primary to secondary care in United Kingdom Parkinson's Disease patients. Specifically, to assess referral patterns, duration of symptoms, diagnostic delays, and primary care visits in Parkinson’s patients; and to see if these differ between ethnic groups.

Using HES- and ONS-linked data, clinical parameters will be examined for relationships with adverse cardiovascular outcomes in an effort to determine risk factor profiles.

The primary exposure of interest for this study will be ethnicity. The demographics of Parkinson’s patients will be described for each ethnic group, and outcomes will include managed in secondary care, falls, stroke, myocardial infarction, CVD-related mortality, hospital admissions, referrals, primary care visits, symptom duration, and all-cause mortality. To assess for differences between ethnic groups logistic regression will be used for binary outcomes (eg patient managed in secondary care), survival analysis for time to event outcomes (e.g. all cause mortality) and poisson regression models will be used to assess differences in incidence rates (eg primary care visits). All models will be adjusted for potential confounders such as age and BMI.

Health Outcomes to be Measured

Outcomes include falls, stroke, myocardial infarction, COVID-19 infection and mortality, CVD-related mortality, hospital admissions, and all-cause mortality.

Collaborators

Victoria Haunton - Chief Investigator - University of Leicester
Jatinder Minhas - Corresponding Applicant - University of Leicester
Clare Gillies - Collaborator - University of Leicester
Sharmin Shabnam - Collaborator - University of Leicester

Linkages

HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation