This page highlights current research projects in the area of functional neurological disorder (FND). If you want to find out more about any of the studies please follow the links below. If you are researcher and want your project added to the website please complete the Research Project Submission Form.
Feasibility and Acceptability of Body Signal Integration Training for functional neurological disorder: A case series
New research suggests that FND occurs when bodily signals are unclear and ‘fuzzy’. This causes the brain to misinterpret them, resulting in FND. This is a bit like visual information being blurry for someone who needs to wear glasses. We have designed a treatment to sharpen up these. The treatment package will include various exercises involving tuning into the body under different circumstances. We might present you with short clips or stories to make you feel a little bit happy or sad and then ask you to tune into how the body feels in response to them. We are looking for eight people with a diagnosis of FND to try the treatment and see if it is feasible to deliver and acceptable to people.
Project Start Date: September 1, 2023
Project End Date: October 27, 2023
Diagnosis Communication of Functional Seizures to Adolescents and Parents/Caregivers
In this project, we will be conducting individual qualitative semi-structured interviews with adolescents and young adults (ages 12-21) diagnosed with functional seizures as well as their parents/caregivers about their experiences and best practice recommendations for how pediatric neurologists should communicate a new diagnosis of functional seizures to patients and families. Optimizing diagnosis communication of functional seizures to patients and families may increase understanding and therapeutic benefit of the diagnosis, as well as increase uptake of recommended therapies. Findings will inform a future intervention to improve diagnosis communication of functional seizures among pediatric neurologists.
Project Start Date: March 1, 2023
Project End Date: March 1, 2024
Therapeutic Interventions for Adolescents with Non-Epileptic Seizures
For this project the researchers are interested in learning more about what emerging adults’ experiences were with non-epileptic seizures during adolescence, and what their experience was like in therapy when seeking treatment for their non-epileptic seizures. If you are between the ages of 18 to 24, have attended between 1 to 20 therapy sessions between the ages of 15 to 17, are an English-speaker, and have access to Zoom, I would appreciate the opportunity to interview you about your experiences. Participation includes a video-conferencing interview via Zoom lasting approximately one hour.
The benefits of this study are to expand the understanding of how certain therapeutic interventions can be helpful for adolescents who have non-epileptic seizures and have attended therapy. Additionally, this will help parents understand what treatments they should be seeking, and this will aid therapists and medical staff by informing them what some of the therapeutic interventions they may consider using in therapy to help with symptom reduction.
Additionally, participants will get to choose to receive a $20 gift card to either Starbucks or Amazon. This gift card will be emailed to the participant at the end of the interview.
If you would like to participate in the study or if you have any questions please contact me at ntrantel@antioch.edu.
Project Start Date: May 1, 2023
Project End Date: May 1, 2024
The relationship between early adverse experiences, self-compassion, self-stigma, and health related quality of life in individuals with a diagnosis of functional neurological disorder.
The purpose of this study is to better understand the relationship between early adverse experiences, levels of self-compassion, and internalised self-stigma for people diagnosed with functional neurological disorder (FND). The study will look at how these psychological factors affect a person's current quality of life, in order to think about ways to improve services and support available. This research aims to increase awareness amongst health professionals about the contributing factors in FND, which will allow for the future development of new care models and improvements to services.
Participants need to be over the age of 18 years old, resident in the UK, and have a diagnosis of FND. Participation should take approx. 20mins and this involves filling in a questionnaire online.
You can find out more information via the Twitter page @livingwithFND23 or participate in the study here: https://edinburgh.eu.qualtrics.com/jfe/form/SV_blTpzkDQDlqqacS
Project Start Date: May 1, 2023
Project End Date: March 1, 2024
Factors Influencing the Impact of Stigma on Distress and Quality of Life for Individuals who Experience Functional Seizures
This short study aims to investigate the relationships between stigma and quality of life and distress for people experiencing Functional Seizures (often also called non-epileptic seizures (NES), psychogenic non-epileptic seizures (PNES), non-epileptic attack disorder (NEAD), and dissociative seizures), and to explore the psychological factors that may impact these relationships. We hope that our findings will add to the
evidence base and understanding of functional seizures, and that in future it could serve to inform treatment options to support people experiencing functional seizures.
Participation is open to anyone over the age of 18 years old, who has a diagnosis of Functional Seizures and does not also have a diagnosis of epilepsy, or experience seizures due to another health condition. Participation should take 15-20 minutes and involves filling in a number of questionnaires online.
You can find more information and updates on our wiki page www.wiki.ed.ac.uk/display/FSSS/ or on Twitter @FSStigmaStudy
Project Start Date: May 5, 2023
Project End Date: April 5, 2024
An exploration of UK Speech and Language Therapists’ (SLTs) treatment and management of functional communication disorders (FCDs). A mixed-methods online survey.
Kirsty McKenzie (FNDS Allied Health Member)
This research study will use a mixed-methods online survey to explore what management approaches and interventions practicing Speech and Language Therapists (SLTs) in the UK are using to manage adults (18+) with Functional Communication Disorders (FCDs). A 20-min online survey was developed using Qualtrics XM software and piloted before dissemination. The survey was developed with a mix of qualitative and quantitative questions. The survey will be disseminated via social media and professional networks. Inclusion criteria: (1) HCPC registered SLTs; (2) employed by a UK healthcare provider (NHS or independent practice) working either full-time or part-time in any setting (e.g., acute, rehabilitation, or community); (3) NHS AfC Band 6 and above (or equivalent); (4) Experience of managing referrals for FCDs i.e. at least 3 referrals a year.
Project Start Date: January 2, 2023
Project End Date: September 29, 2023
Researching Environmental Exposures in Functional Seizures Study
Laura Strom, MD (FNDS Member)
Living with functional seizures (FS), also called non-epileptic seizures (NES), psychogenic non-epileptic seizures (PNES), non-epileptic attack disorder (NEAD), and dissociative seizures, is often very difficult. Individuals with FS frequently struggle to get their diagnosis, receive understanding from the people in their lives, and access the specialized care they need. These factors have also made research in the FS population difficult. While clinical research is making great progress, public health research is far behind, with serious gaps in understanding basic population characteristics and risk factors. This study seeks to begin addressing these gaps, specifically, we aim to gain a better understanding of the demographics of individuals with FS (for example, race and ethnicity, gender identity, and sexual orientation) and investigate potential pre-onset physical and social environmental exposures that may be associated with risk for FS. This cross-sectional study will use a self-report anonymous survey to test items and attain descriptive statistics. We intend to recruit at least 30 individuals ages 18 to 50 with a diagnosis of functional seizures. Participants may be recruited through clinic communications, sharing on stakeholder websites, online research sites, and social media. The survey includes demographics, items regarding experiences with seizures, and questions about the participant’s pre-onset physical and social environment.
Project Start Date: January 13, 2023
Project End Date: January 13, 2024
Managing Adolescent Seizures Survey (MASS)
Andrea Tanner, PhD, RN, NCSN (FNDS Trainee Member)
Adolescents with a mental health condition called psychogenic nonepileptic seizures (PNES) experience poorer academic, mental health, and quality of life (QOL) outcomes than healthy peers or those with epileptic seizures.A recent qualitative study revealed that stress, bullying, stigma, and school connectedness affected PNES management and QOL; however, these constructs and relationships have not been measured for adolescents withPNES.
Objectives: The objectives of the Managing Adolescent Seizures Survey study are to 1)examine relationships among antecedents (demographics, condition details, stress, bullying, stigma, school connectedness, school seizure policies, Section 504/Individual Education Program [IEP] plan utilization, and nurse presence), PNES management processes(illness representation and coping strategy), and PNES management outcomes(seizure severity, frequency, school attendance, academic performance, and QOL); 2) explore adolescents’ perceived PNES management needs.
Methods: Cross-sectional design using self-report surveyParticipants:An online survey will be distributed to 50 or more adolescents, recruited through PNES centers and social media, aged 10 to 17 years, attending school with PNES.
Instruments: MASS includes closed and open-ended items to assess demographic, condition, and school characteristics as well as valid and reliable instruments to measure adolescent stress, bullying, stigma, school connectedness, illness representation, coping strategy, seizure severity, and QOL.
Project Start Date: May 1, 2022
Project End Date: June 30, 2023
Investigating the Role of Compassion in the Psychological Impact of Functional Seizures/Non-Epileptic Seizures
The psychological impact of being diagnosed with, and living with, functional seizures is significant, increasing individuals’ levels of self-criticism, self-blame, and shame. Despite this, current available psychological interventions for individuals with functional seizures do not focus on these distressing tendencies. Compassion Focused Therapy (CFT) is a model that does place a focus on addressing self-criticism, shame, and self-blame, by increasing individuals’ capacity to be compassionate toward themselves and others, as well as to be open to receiving it from others. The aim of the present study is to explore the role of compassion in the psychological impact of functional seizures, to provide a rationale to support the use of CFT in alleviating the distress caused by the condition. A quantitative, cross-sectional moderation design using survey methodology will be adopted to investigate moderating effects of the flows of compassion on the relationship between seizure severity and the psychological impact of functional seizures. 230 self-selected participants are aimed to be recruited via organisations' social medias, websites, and email and the researcher’s personal social media. Participants will complete an online survey, comprising of a range of questionnaires, measuring their levels of compassion; seizure severity; mental wellbeing, mental health and quality of life to answer the following research question: Does the flow of compassion moderate the relationship between seizure severity and the psychological impact of functional seizures? It is hypothesised the flows of compassion will significantly moderate the relationship between seizure severity and the psychological impact of NES.
Project Start Date: September 21, 2020
Project End Date: September 15, 2023
Evaluating clinical decision making for patients with seizures
Wesley T. Kerr, MD, PhD (FNDS Trainee Member)
The psychological impact of being diagnosed with, and living with, functional seizures is significant, increasing individuals’ levels of self-criticism, self-blame, and shame. Despite this, current available psychological interventions for individuals with functional seizures do not focus on these distressing tendencies. Compassion Focused Therapy (CFT) is a model that does place a focus on addressing self-criticism, shame, and self-blame, by increasing individuals’ capacity to be compassionate toward themselves and others, as well as to be open to receiving it from others. The aim of the present study is to explore the role of compassion in the psychological impact of functional seizures, to provide a rationale to support the use of CFT in alleviating the distress caused by the condition. A quantitative, cross-sectional moderation design using survey methodology will be adopted to investigate moderating effects of the flows of compassion on the relationship between seizure severity and the psychological impact of functional seizures. 230 self-selected participants are aimed to be recruited via organisations' social medias, websites, and email and the researcher’s personal social media. Participants will complete an online survey, comprising of a range of questionnaires, measuring their levels of compassion; seizure severity; mental wellbeing, mental health and quality of life to answer the following research question: Does the flow of compassion moderate the relationship between seizure severity and the psychological impact of functional seizures? It is hypothesised the flows of compassion will significantly moderate the relationship between seizure severity and the psychological impact of NES.
Project Start Date: December 1, 2022
Project End Date: October 1, 2023
Retraining and Control Therapy (ReACT): Sense of Control and Symptom Expectations as Targets of a Treatment for PNES
Aaron D. Fobian, PhD (FNDS Member)
The purpose of this study is to assess sense of control and catastrophic symptom expectations as targets for Retraining and Control Therapy (ReACT- an intervention focused on changing behaviors and thoughts) for treatment of pediatric psychogenic non-epileptic seizures (PNES, episodes resembling epileptic seizures but not correlated with epileptiform discharges). 11-18-year-olds diagnosed with PNES will engage in twelve sessions of ReACT or another therapy commonly used to treat PNES. Sense of control over actions will be measured by the magic and turbulence task, a well-validated measure of sense of control. Participants will complete the cold pressor test (CPT) in which participants hold their hand in cool water for as long as possible up to 3 minutes. Catastrophic symptom expectations in response to the CPT will be measured by Pain Catastrophizing Scale for Children (PCS-C) pain tolerance (time with hand in water) and cortisol response. Target assessments will occur 7 days before treatment, 7 days after 12th treatment session, 6 months and 12 months after the 12th treatment session. PNES frequency will be measured from 30 days before to 12 months after treatment.
Project Start Date: October 1, 2021
Project End Date: June 30, 2026
The Experience of Neurologists as they diagnose FND
FND has been one of the most common reasons for presentation at neurology clinics, estimates suggest that approximately thirty percent of patients attending neurology clinics are patients whose symptoms are ‘not at all’ or only ‘somewhat’ explained by disease (Carson et al., 2000). The majority of research into the diagnostic delivery of FND has been focused on the patient experience (Carton, 2003; Monzoni, 2011; Ring, 2005; Thompson, 2009). However, as it is neurologists who make and deliver an FND diagnosis, and with the figures of patients with FND attending neurology clinics so high, it is reasonable to consider how neurologists’ experience both making and delivering a diagnosis, which historically was assumed “not regarded as a problem within the territory of neurology” (Stone et al., 2008).
This research wants to learn about the neurologists’ experience of working with patients with FND, both in the diagnostic procedure and the delivery of an FND diagnosis. In doing so, a better understanding of support needs for neurologists could be gathered.
The research requires neurologists to take part in an interview for up to one hour, over MS Teams. All information gathered in the study will be fully anonymized.
The research is part of a doctoral thesis by a trainee clinical psychologist.
Project Start Date: April 1, 2022
Project End Date: March 31, 2023