NEAD AND PAIN: UNDERSTANDING POSSIBLE LINKS_Version1
Research type
Research Study
Full title
NON-EPILEPTIC ATTACK DISORDER AND PAIN: UNDERSTANDING POSSIBLE LINKS.
IRAS ID
288011
Contact name
Rajiv Mohanraj
Contact email
Sponsor organisation
Salford Royal NHS Foundation Trust
Clinicaltrials.gov Identifier
S20NEURO09-S, Sponsor ID
Duration of Study in the UK
0 years, 8 months, 30 days
Research summary
Research Summary:
Non-Epileptic Attack Disorder (NEAD) is a common condition where symptoms resemble epileptic seizures, but differently from epilepsy, they are caused by a range of biopsychosocial factors (for example, a history of trauma, neglect, or physical health difficulties). A diagnosis of NEAD is often associated with frequent access to healthcare and pain seems to be one of the most common causes of emergency visits and hospitalizations in NEAD patients (Gazzola et al., 2021; Salinsky et al., 2016). Moreover, people with NEAD often experience pain-related disorders, such as fibromyalgia, headaches and chronic pain (Benbadis, 2005; Kingston & Schwedt, 2017). \nIn line with this, NEAD patients accessing the Manchester Centre for Clinical Neurosciences (MCCN) often report that pain can be a ‘trigger’ for their seizures. Nevertheless, the link between pain and NEAD seizures remains underexplored. \nThis considered, we plan to develop an intervention to reduce pain in NEAD patients, with an anticipated reduction in non-epileptic attacks. \nIn this preliminary stage, we will conduct an online survey to understand the frequency, severity and type(s) of pain experienced by NEAD patients. We aim to recruit 300 patients who have been referred to the MCCN to receive NEAD-related care. Following the survey, approximately 20 participants who reported the highest scores on pain measures in the survey will be contacted to take part in an interview focusing on their subjective experience of pain and its perceived link with seizures. \nAfter this pilot stage, drawing from the work of the Pain Research Group (led by Professor Anthony Jones), we plan to use visual stimuli to increase cortical alpha activity in the brain of people with NEAD, with the aim of reducing the severity of their pain. By doing so, we also plan to assess if reducing pain may also reduce the frequency of their NEAD seizures.Summary of Results:
Non-Epileptic Attack Disorder (NEAD) is a common condition whose symptoms resemble epileptic seizures, but differently from epilepsy, they are caused by psychological factors (for example, a history of trauma). A diagnosis of NEAD is often associated with frequent access to healthcare, and pain seems to be one of the most common causes of emergency visits and hospitalizations in NEAD patients. Moreover, people with NEAD often experience pain-related disorders, such as fibromyalgia, headaches and chronic pain.In line with this, NEAD patients accessing the Salford Royal NHS Foundation Trust (SRFT) often report that pain can be a ‘trigger’ for their seizures. Nevertheless, the link between pain and NEAD seizures remains underexplored. Considering this, we plan to develop an intervention to reduce pain in NEAD patients. In this preliminary stage, we conducted a mixed-methods study to understand the frequency and severity of co-occurring NEAD attacks and pain symptoms, as well as people's ways of coping with them and the impact they have on their lives.
One hundred sixteen patients who were referred to SRFT to receive NEAD-related care have completed an online survey investigating their NEAD and pain symptoms and the mutual links between these conditions. Following this stage, twelve participants who reported the highest scores on pain measures in the survey were invited to take part in interviews focusing on their subjective experience of NEAD and pain and their impact on their quality of life. The study findings indicated that pain symptoms create substantial impairment in various areas of NEAD patients’ lives (e.g., ability to work) and there was a significant positive correlation between pain intensity and self-reported low quality/enjoyment of life. Service care utilisation for the combined burden of NEAD and pain was high, and the vast majority (89%) of participants outlined a direct, causal link between NEAD attacks and pain, with either pain leading to worsening of NEAD (40%) or NEAD attacks leading to increased pain (49%).
After this pilot stage, drawing from the work of the Pain Research Group (led by Prof Anthony Jones), we plan to use visual stimuli to increase cortical alpha activity in the brain of people with NEAD, to reduce the severity of their pain. By doing so, we also plan to assess if reducing pain may also reduce the frequency of NEAD seizures.
REC name
South Central - Oxford B Research Ethics Committee
REC reference
21/SC/0075
Date of REC Opinion
12 May 2021
REC opinion
Further Information Favourable Opinion