Patients’ perspectives of living with epilepsy or PNES: A thematic analysis investigating patients’ writings Gregg Rawlings, Ian Brown, Brendan Stone, Markus Reuber ghrawlings1@sheffield.ac.uk University of Sheffield, UK Epilepsy Introduction Qualitative methodologies can enhance our understanding of patients’ perceptions of seizure disorders1. Qualitative approaches capture and examine individuals’ own words, producing data that is rich in detail. This study examines the subjective experience of living with epilepsy or psychogenic non-epileptic seizures (PNES) by qualitatively analysing patients’ written accounts. Writing is an individual act allowing for private consideration, exploration and expression of thoughts and feelings2. Displays of coping Living with seizures Seizure onset Treatment & outcomes Emotions Seizure symptoms Causation & development Methods Lack of understanding Participants were recruited from outpatient neurology clinics at the Royal Hallamshire Hospital, Sheffield (UK) and membership-led organisations for individuals with seizures. Participants were asked to produce four pieces of writing: (1) about their very deepest thoughts and feelings about their condition; (2) a letter to their condition; (3) a letter to their younger self; and (4) about a personal value. All the writings were analysed thematically using a theory and data driven approach. PNES Figure 1. Comparative diagram highlighting overlapping and non-overlapping key themes from thematic analyses. A thematic comparison analysis identified differences between the two conditions. Results Participants with epilepsy (N=20) and PNES (N=19) were closely matched on: age, gender, years of education, quality of life (NEWQOL-6D), seizure severity (LSSS-3), and number of written words produced. Participants with PNES had higher anxiety (GAD-7) and depression scores (NDDI-E). Those with epilepsy had experienced their seizures for longer and reported fewer seizures in the last four weeks. In the writings of individuals with epilepsy five key themes emerged reflecting experiences of: (1) seizure onset, (2) seizure symptoms, (3) treatment and outcomes, (4) living with epilepsy, and (5) displays of coping (Figure 1). In participants with PNES six key themes emerged: (1) living with PNES, (2) emotions, (3) seizure symptoms, (4) treatment and outcomes, (5) causation and development, and (6) lack of understanding of participants, others and healthcare professionals. HCP = Healthcare professionals Discussion Participants with PNES highlighted their own lack of understanding of their condition and described how others, especially healthcare professionals, have reacted to their symptoms, whereas those with epilepsy were keen to present themselves as individuals coping with adversity. Understanding patients’ experiences can hold diagnostic, treatment and prognostic implications. References RAPPORT, F et al. 2015. Qualitative research and its methods in epilepsy: Contributing to an understanding of patients’ lived experiences of the disease. Epilepsy & Behavior, 45, 94-100. HOWLETT, S. 2004. Writing the link between the body and mind: the use of writing with clients suffering from chronic-stress related medical disorders. In: Writing Cures: an introductory handbook of writing in counseling and psychotherapy. East Sussex, Brunner-Routledge UK. We would like to thank the following membership-led organisations for their assistance with recruiting participants: Epilepsy Action, Epilepsy Research UK, Epilepsy Scotland, FND Hope, nonepilepticattackdisorder.org, and the North East Regional Group.