Outcome measurement in functional neurological disorder
Research type
Research Study
Full title
Outcome measurement in functional neurological disorder: exploring the views of patients and other stakeholders.
IRAS ID
236203
Contact name
Susannah Pick
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 8 months, 1 days
Research summary
Functional neurological disorder (FND) is diagnosed when a patient reports neurological symptoms that are not associated with an identifiable physical disease process (DSM-5). Symptoms can be similar to any type of neurological disorder, although seizures, limb weakness and movement disorders are particularly common. Individuals with FND report significant distress and disability and many remain symptomatic on a long-term basis. However, there is currently a limited evidence base for existing treatment options. To build a stronger evidence base for interventions in FND, an important first step is to ensure meaningful, accurate and reliable measurement of patient outcomes, in routine practice and intervention research (i.e., clinical trials). At present, there are few outcome measures (OMs) designed specifically for FND and there is a lack of consensus regarding which domains are most important to measure and whether patient- or clinician-rated measures are most relevant. The development of relevant and acceptable OMs is, therefore, a key challenge to be addressed in this field. The aim of this project is to investigate the perspectives of patients with FND, along with other relevant stakeholders (e.g., healthcare professionals, caregivers, relatives) on the domains that they feel are most important to capture in OMs for the disorder, and the ways in which these domains should be measured. The views of participants will be explored using qualitative semi-structured interviews. The findings will be combined with those of a systematic review conducted by the Chief Investigator (CI) and the consensus opinion of a group of international FND experts (FND-COM). Together, these findings will be used in the development of international guidelines for a core set of OMs for use in FND and as such, will have the potential to greatly improve outcome monitoring and treatment evaluation in this disorder.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
18/WM/0110
Date of REC Opinion
25 May 2018
REC opinion
Further Information Favourable Opinion