MD (Res) Scholarship 2019: Cate Bailey; King’s College London
Project Title: Experiences, understanding and conceptual models in patients with functional neurological disorders: a qualitative and quantitative study.
Supervisor: Dr Timothy Nicholson, Dr Norman Poole, Professor Thomas Craig, Dr Virginia Eatough
This study will explore how people diagnosed with Functional Neurological Disorders (FNDs) explain and make sense of their experiences. FNDs occur when a person develops neurological symptoms (such as weakness, numbness, tremors or seizures) which are not caused by neurological disease. This means that there is a problem with the functioning of the neurological system, but no identifiable structural, biochemical or electrical diseases such as a stroke or multiple sclerosis to account for the symptoms. FND symptoms are common and treatable, though remain poorly understood and are associated with high levels of stigma and disability. Over time the name for these conditions has changed often – from “hysteria” to “conversion disorder” – and more recently the preferred term has become “functional neurological disorders”.
Previously, patients were often told that their symptoms were “all in your head” or caused by unconscious psychological trauma. However, recent research advances have contributed to explanations which incorporate the mind, brain and the body. Clinicians who work with people who have FNDs are increasingly trying to develop explanations which incorporate biological, psychological and social factors (often termed bio-psycho-social), in keeping with other medical conditions. Part of the assessment process involves demonstrating the reversibility of symptoms, ie: that the affected area can function normally under certain circumstances, which can engender hope in the potential for recovery and engagement in treatment.
Although there have been major advances in the neuroscientific study of these disorders there have been few studies exploring patient experience. Therefore, the aim of this project is to explore how patients with FNDs experience their illness and make sense of the diagnosis. A second aim is to understand how newer bio-psycho-social explanations, when delivered through a psychoeducation session, are received by patients living with FND. The psychoeducation session is a novel 2 hour program for patients with FNDs and their family. This includes lectures from an experienced neurologist, neuropsychiatrist, psychologist, specialist physiotherapist, and patient-expert.
This project aims to explore illness beliefs, explanatory models and the experiences of patients with functional neurological disorders. This will be achieved through both qualitative and quantitative inquiry. The quantitative aspects of the study will involve gathering data on illness beliefs, comorbidities, quality of life, functioning and perceptions of stigma before and after patients attend the above psychoeducation session. The qualitative aspects will include in depth interviews with patients with functional weakness or movement disorders and focus groups with patients who have attended the psychoeducation session to try to understand their experiences and ongoing needs.
Hi, I’m Cate and in June 2019 I started an MD (Res) at King’s College London. I’m a higher trainee in older and general adult psychiatry and work clinically in East London Foundation NHS Trust. This year I’ve taken a year out of my training to work as a Fellow in Medical Education at Barts and the London School of Medicine and Dentistry, and Queen Mary University.
I previously completed an NIHR Funded Academic Clinical Fellowship in Old Age Psychiatry during my core training in East London. During this time I attained a Masters in Research and my work focussed on functional memory disorders and communication of dementia diagnoses in memory clinics, as part of the ShareD (Shared Decision Making in Dementia) Study.
My clinical interests are in liaison and older adult psychiatry, and my research interests are focussed on communication between clinicians and patients and understanding and improving the experience of people with disorders at the interface between physical and mental health. I am also the editor of the trainees’ section of the BJPsych Bulletin which allows me to foster collaborations between trainee psychiatrists, members of the multidisciplinary team and those with lived experience. I’m thrilled to have been awarded an MD (Res) Scholarship for this project and am grateful for the support it affords me in pursuing this important area of research.
Start Date: June 2019
First Year Report 2020
Revised study title: Experiences, understanding and conceptual models in patients with functional neurological disorders: a qualitative and quantitative study
Supervisors: Dr Timothy Nicholson, Dr Norman Poole, Professor Thomas Craig, Dr Virginia Eatough
I commenced my part-time MD(Res) at King’s College London in June 2019 and was thrilled to receive news of the MHRUK Scholarship in September 2019. My first task in this year was to finalise the outline and exact details of the study in preparation for application for ethics approval.
The primary aim of this study is to explore the lived experience, understanding and conceptualisation of the illness, engagement and needs of people with Functional Neurological Disorders (FND). A secondary aim is to investigate the experiences of people with FND who receive a novel multi-disciplinary psychoeducation session. Over 2019 and early 2020 I completed the protocol which detailed the background to the study, exact recruitment strategy, quantitative measures and procedures for qualitative interviews. Conversations with people with lived experience, and reviewing the literature lead me to include quantitative measures on stigma, which had not previously been researched in this group. I have liaised with FND Hope (a global charity for people with FND which has an advisory committee for reviewing scientific research). Feedback from FND Hope has been incredibly helpful in shaping the focus of the study on the lived experience of people with FND. It has highlighted that one of the proposed measures for the quantitative aspect might cause some frustration to people with FND, and as such there are ongoing discussions in how to mitigate this. Options include using a longer and more detailed measure, and the addition of a “think aloud” aspect where participants are invited to voice their experiences of the questionnaire as they complete it. This option would allow data to be gathered on the acceptability of the measure for people with FND, given that it is widely used in FND and other medical conditions. Further consultation is planned with FND Hope following revisions to the protocol. Advice from the McPin foundation has also been very helpful in thinking about how to engage people with lived experience in all aspects of the study.
In light of the ongoing effects of COVID I have made amendments to accommodate the potential need for interviews and focus groups to be conducted remotely. The quantitative aspects of the study will already be collected online with secure software called RedCap.
I have been successful in being granted funding from the Psychiatry Research Trust for participant fees and travel.
I have completed draft outlines and search strategies for a scoping review of patient and family experiences of FND, and systematic review of healthcare professionals’ experiences of FND. The future plan is to collaborate with a service-user researcher on both these reviews, the “think aloud” aspects of the research and the focus groups.
In responding to the COVID-19 pandemic I reduced my number of academic days and returned to clinical work to assist on the acute mental health ward, to cover staff absences. My academic post in medical education also changed rapidly to accommodate virtual placements for students and providing COVID related education to doctors working in my trust. In discussion with my supervisors a 3 month deferment of my MD was agreed. I have now returned to my MD will be able to devote the required time in the coming months.
I have been incredibly grateful for the opportunities the scholarship has afforded, and for the understanding from MHRUK in the delays due to COVID-19. In the next year my plans include:
· Completing the revised protocol in conjunction with advice from FND Hope.
· Submitting the projected for NHS ethics approval.
· Commencing work on the systematic and scoping reviews, with a view to publishing these as pieces of independent research in a peer-reviewed journal.
· Pending ethics approval, beginning to recruit patients for the quantitative aspects of the study which will look at experiences of the FND psychoeducation session at St George’s.