Patient Experience in FND
Research type
Research Study
Full title
Patient Experience in Functional Neurological Disorder
IRAS ID
307356
Contact name
Caoimhe McLoughlin
Contact email
Sponsor organisation
Academic, University of Edinburgh
Duration of Study in the UK
0 years, 8 months, 1 days
Research summary
Functional Neurological Disorder (FND) is a condition that describes a number of neurological symptoms such as weakness, seizures or tremor that relate to a functional problem of the nervous system, as opposed to a structural one. FND symptoms are a common reason for referral to neurology clinic and it is a condition that carries a high level of disability. Despite FND being relatively common and disabling, it is often viewed skeptically by many, leading to a significant degree of stigma associated with FND. Stigma presents a significant barrier to successful diagnosis and treatment, impacting on patient quality of life and psychosocial health.
The overall aim of this study is to explore and describe the patient experience in a group of patients diagnosed with FND, assessing how(if) stigma is experienced over time from the outset of diagnosis. These patients will be recruited from neurology and neuropsychiatry clinics. This project is part of the larger “ETUDE” program which stands for Encompassing Training in Functional Disorders across Europe a program designed to advance the knowledge of Functional Disorders across Europe, designed by the EURONET-SOMA network.
Our current project aims to assess the patients’ lived experience of FND as it emerges over time, using quantitative and qualitative methods. Quantitative means we will use instruments to measure stigma such as questionnaires. Qualitative means we will be carrying out semi-structured interviews with a smaller number of patients to get a deeper sense of their experience. We hope that the information we gather will enhance our understanding of stigma; and highlight directions for interventions to improve patient experience for this group.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
21/SC/0418
Date of REC Opinion
14 Jan 2022
REC opinion
Further Information Favourable Opinion