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.

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: April 30, 2023

Investigating the Role of Compassion in the Psychological Impact of Functional Seizures/Non-Epileptic Seizures

Amy Utting

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

Rebecca Waring

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

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