Initial presentations of multiple sclerosis: understanding pathways to diagnosis Filled

Lead Research Organisation: Queen Mary University of London
Department Name: Wolfson Institute of Population Health

Abstract

This PhD aims to better understand how people subsequently diagnosed with multiple sclerosis (MS)experience their initial symptoms and present to primary care. The student will firstly examine this from the patient perspective, before using large healthcare datasets to examine and understand the similarities and differences between patient experiences and documented diagnoses.

People with MS experience a variety of symptoms before they are diagnosed, and large studies from the UK and overseas have shown that they have more appointments with GPs and other healthcare providers for 5 years before they are formally diagnosed. However, it remains unknown how people subsequently diagnosed with MS make decisions about how and when to seek medical care at the earliest stage of their disease journey.

The student will seek to understand when people with MS perceive their symptoms to have started, and how they interact with healthcare professionals at this time. They will examine the potential barriers that different people with MS face in terms of onward referral from primary care using focused interviews with people newly diagnosed with MS in East London. This will allow the student to understand the impact of social determinants of health including race, ethnicity, gender and socioeconomic deprivation on pathways to MS diagnosis within a uniquely diverse and deprived population.

The student will then take advantage of linked healthcare datasets available in East London to examine how these reported symptoms are recorded in primary care records. They will perform a detailed study of the healthcare records of people who have taken part in the first part of the study, facilitating an understanding of how symptoms might be recorded across different groups of people who subsequently receive an MS diagnosis. They will then use a large, diverse primary care dataset of >1,000,000 people in East London (>1000 with MS) to understand patterns in the way that symptoms are recorded, and how these reflectand differ from the experience of people subsequently diagnosed with MS.

Collaboration with the MS Society is embedded across the PhD, including public involvement training. During their final year, the student will complete an internship within the Research & External Affairs directorate at the MS Society in order to ensure policy impact from their findings. They will collaborate with the MS Society Research Communications team to disseminate findings to people affected by MS via a number of channels, to improve public knowledge and awareness.

Publications

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Studentship Projects

Project Reference Relationship Related To Start End Student Name
ES/P000703/1 01/10/2017 30/09/2027
2887342 Studentship ES/P000703/1 01/10/2023 30/09/2027 Hiba Adan