FND: Understanding experiences of diagnosis and the emotional impact
Research type
Research Study
Full title
Functional Neurological Disorder: Understanding patient experiences of diagnosis and the emotional impact, compared to Multiple Sclerosis.
IRAS ID
306399
Contact name
Jerry Burgess
Contact email
Sponsor organisation
Salomon's Institute for Applied Psychology
Duration of Study in the UK
0 years, 7 months, 29 days
Research summary
Functional Neurological Disorder presents a dilemma for neurology services and evidence has shown that the experience of diagnosis can result in iatrogenic harm for patients, thereby worsening their physical and mental health. The aim of this study is to make sense of patient experiences of receiving an FND diagnosis, with a comparison to MS. There isn’t a breadth of research into experiences of patients with FND. A study by Nielsen et al. (2020) demonstrated that patients felt dissatisfied and misunderstood by healthcare professionals. However, this was limited to patients with motor symptoms only and no comparison was made that might indicate whether dissatisfaction was linked to their specific diagnosis. A study by O’Keeffe et al. (2021) made a comparison with MS patients and highlighted that there are differences in experiences across several domains. This also fits our clinical experience of working with patients with FND, who are treated differently to patients with other neurological conditions that present similarly. However, this study was limited to a service evaluation using quantitative methods for data collection.
Therefore, this study is the first to investigate the experiences of patients with FND and to compare with the experiences of MS patients. The main aim is to understand the meaning they derive from this lived experience of diagnosis and subsequent pathways and how this might differ to patients with MS. Understanding and interpretation of these differences might inform change in the process of FND diagnosis and how healthcare professionals interact with this patient group.
Patients with FND and patients with MS will be recruited through St Georges NHS trust to participate in a semi-structured interview lasting up to 90 minutes. Interviews will be offered as a virtual appointment via video link or face to face at a clinical space within the host NHS trust.
REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
22/NW/0029
Date of REC Opinion
5 Apr 2022
REC opinion
Further Information Favourable Opinion