PSYCHOLOGICAL INFLEXIBILITY IN NEAD 1 Psychological Inflexibility and Somatisation in Non-Epileptic Attack Disorder

Background: There is no clear understanding of what causes and maintains non-epileptic attack disorder (NEAD), or which psychological therapies may be helpful. The relationships between variables of psychological inflexibility: experiential avoidance (EA), cognitive fusion (CF), mindfulness, and key outcome variables in NEAD: somatisation, impact upon life and non-epileptic attack (NEA) frequency were investigated. Method: 285 individuals with NEAD completed validated measures online. Linear regression was used to explore which variables predicted somatisation and impact upon life. Ordinal regression was used to explore variables of interest in regard to NEA frequency. Results: EA, mindfulness, CF, somatisation and impact upon life were all significantly correlated. Mindfulness uniquely predicted somatisation when considered in a model with EA and CF. Higher levels of somatization increased the odds of experiencing more NEAs. Individuals who perceived NEAD as having a more significant impact upon their lives had more NEAs, more somatic complaints and more EA. Conclusions: Higher levels of CF and EA appear to be related to lower levels of mindfulness. lower levels mindfulness predicted greater levels of somatisation and somatisation predicts NEA frequency. Interventions which tackle avoidance and increase mindfulness, such as acceptance and commitment therapy, may be beneficial for individuals with NEAD. Future directions for research are suggested as the results indicate more research is needed. PSYCHOLOGICAL INFLEXIBILITY IN NEAD 3 Psychological Inflexibility, Somatisation and the Impact of Non-Epileptic Attack Disorder 1.1 Non-Epileptic Attack Disorder Non-epileptic attacks (NEAs) are medically unexplained paroxysmal attacks which resemble epileptic seizures but for which no epileptiform discharges can be found [1, 2]. Nonepileptic attack disorder (NEAD) is still a poorly understood phenomenon and there is debate as to how it can best be explained and understood. Although it is agreed that NEAs are most likely caused, or otherwise influenced, by psychological factors as opposed to unknown organic physiopathology [3], there is less known about what psychological factors and processes may contribute to NEAD. Brown and Reuber [1] posit a theoretical integrative cognitive model of NEAD in which a cognitive representation of an NEA, the ‘seizure scaffold,’ is activated when individuals experience internal or external triggers, such as trauma memories, hypo/hyper arousal, and daily stressors which lead the individual to identify a seizure risk [1]. The seizure scaffold is a cognitive blueprint of the NEA which has been established through past experiences. Once a trigger has been identified, individuals then anticipate a seizure, which in turn activates the seizure scaffold. Following the activation of a seizure scaffold, it is a deficit in inhibitory processing which causes the NEA (the physical manifestation of the seizure scaffold). One psychological concept of potential relevance in this model is psychological inflexibility. This occurs when individuals perceive that they are unable to change their internal or external behaviour to be in accordance with their own desires and values. It is comprised of six key components: experiential avoidance (EA), cognitive fusion (CF), attachment to the conceptualised self, dominance of the conceptualised past and future, PSYCHOLOGICAL INFLEXIBILITY IN NEAD 4 lack of values, clarity and unworkable action [4]. All components of psychological inflexibility are thought to be highly interconnected constructs but to still uniquely contribute to psychological distress [5]. Three aspects of psychological inflexibility, cognitive fusion (entanglement of thoughts) [6], experiential avoidance (the active experience of disengaging from unwanted thoughts of feelings) [6], and mindfulness (being in contact with the present moment), appear to be theoretically important within the Brown and Reuber model [1]. CF is when thoughts become entangled with behavioural responses, thoughts are not viewed as options or opinions but absolute truths, which must be acted upon. Thus, an individual will have a perceived lack of personal agency in their behaviours [7]. For example, an individual with NEAD may think “I cannot go out as I will have a NEA” and due to high levels of conviction will not be able to go out, because going out will inevitably lead to an NEA. CF may be important for the seizure scaffold as it appears likely that individuals who have higher levels of CF will be entangled with the mental representation of an NEA, feeling it to be a real and true event to which they must respond [6]. Individuals with NEAD then possibly engage in EA to try to avoid internal experiences (thoughts and physical sensations) associated with NEAs [8]. Engaging in EA can paradoxically intensify and strengthen unwanted internal experiences [6]. Consequently, attempting to suppress thoughts of seizures or unwanted feelings, may instead strengthen the association between the internal experiences and the ‘seizure scaffold’. Thus, it seems possible that EA may perpetuate CF, and CF in turn perpetuates EA. It is at this point that mindfulness may become important. Inhibition relates to the ability to inhibit or prevent previously learnt rules or sets. Intact inhibitory processes allow an individual to choose how to respond, as opposed to responding in the way that has been learnt previously. Brown and Reuber [1] suggest that PSYCHOLOGICAL INFLEXIBILITY IN NEAD 5 individuals with NEAD have a deficit in inhibitory processing which gives the individual no option but to succumb to the seizure scaffold. Mindfulness has been demonstrated to improve inhibition [8], providing individuals with cognitive skills which allow them the freedom to decide how to respond to thoughts [6]. By increasing individuals’ ability to select how they respond to cognitions, individuals may be able to employ strategies to prevent the NEA from occurring [7], eventually weakening the link between the ‘seizure scaffold’ and the physical manifestation of an NEA [1]. 1.5 Research Aims and Questions In summary, there is reason to believe that the three components of psychological inflexibility described above (EA, CF and mindfulness) might be particularly relevant to the genesis and maintenance of NEAD in accordance with Brown and Reuber’s [1] model. The aim of the current study was to determine whether EA, CF, and mindfulness would predict key NEAD variables. There is no easily identifiable or reliable outcome measure for NEAD [9]. NEA remission is often used, and was therefore used here. However, Reuber et al. [9] suggest that this is too narrow and unlike individuals with epilepsy, ‘seizure’ frequency is not a clear indicator of quality of life and productivity for individuals with NEAD. Therefore impact upon life was measured. Owczarek [10], Wolf, Hentz, Ziemba, Kirlin, Noe, Hoerth, Crepeau, Sirven, Drazkowski and Locke [11] suggested somatisation reduction should be included as a focus of psychological support for individuals with NEAD. Therefore, somatisation was also measured. Three research questions were asked: I) What are the relationships between CF, EA, mindfulness, and somatisation in NEAD? It was hypothesised that higher levels of CF, EA, and lower levels of mindfulness would all be correlated with somatisation and these variables would independently predict somatization. PSYCHOLOGICAL INFLEXIBILITY IN NEAD 6 II) Do the psychological inflexibility variables, NEA frequency and somatisation predict perceived impact on life within the NEAD population? It was hypothesised that all variables would be significantly correlated and that higher levels of EA, CF, and somatisation, higher NEA frequency and lower levels of mindfulness would relate to more impact upon life within the NEAD population. It was also hypothesised that all factors would independently predict impact upon life. III) Does mindfulness, EA, CF, and somatisation predict NEA frequency? It was hypothesised that individuals with higher levels of somatisation, CF and EA, and lower levels of mindfulness would experience more frequent NEAs. 2. Methods 2.1 Design An online single group cross-sectional observational design was used. An online recruitment strategy was selected so as to reach a wide variety of individuals at reduced cost and burden to both participant and researcher [12]. Service users, accessed through NEAD charities, were consulted throughout the design phase of this project. The host institution’s Faculty of Health and Medicine Research Ethics Committee approved the project. All participants provided informed consent. Participants Participants were 285 individuals who identified as having a diagnosis of NEAD. The link to the survey was posted on Twitter, and NEAD Facebook information and support groups with international membership and highly active participation. Several individuals from the Facebook groups and Twitter reposted the link on their personal accounts. In addition, UK charities supporting individuals with NEAD (including NEAD UK, FND Action, and FND Hope) posted the link on their websites and social media platforms (Facebook and PSYCHOLOGICAL INFLEXIBILITY IN NEAD 7 Twitter). Of the 425 individuals who clicked on the link to participate, 331 people consented, 29 of these did not begin the study (completed less than one questionnaire) and a further 17 individuals were missing one or more entire questionnaires and were therefore excluded from the final analysis. 2.2 Analysis All analyses were conducted using IBM SPSS version 23. Mean imputation was used for missing data as less than 0.5% of the data missing, with no consistent patterns and therefore multiple imputation was not necessary [13]. Descriptive characteristics of the data were explored. Normality of all variables of interest (mindfulness, EF, EA, somatisation, impact upon life) were explored us