Abstracts

Rationale: This study aimed to explore patient’s experiences of epilepsy care pathways in Ireland and to ultimately use this evidence to reform and improve existing services. The unpredictability of seizures can cause people with epilepsy (PWE) to live in constant fear of the unknown. While coping with the complex demands of this common chronic disease PWE must manage associated factors including social stigmatisation and prejudice in physical activity, employment and education. The quality of care provided to PWE in Ireland is poorly understood. However, anecdotal evidence suggests sub-optimal and fragmented services. It is recognised that PWE require multidisciplinary, long term, co-ordinated care that empowers the individual towards pro-active management of their condition. This study is part of a larger programme of work which is exploring and documenting the current structure and process of epilepsy care in Ireland. Methods: A qualitative phenomenological approach used semi-structured interviews with open ended questions to explore six main concepts (table 1). Eligible participants were recruited at an epilepsy outpatient department of a large tertiary care hospital in Dublin, Ireland. Interviews with participants were tape-recorded, transcribed and analysed to describe the phenomena of interest. Results: 21 interviews were completed (11 males and 10 females). Three interviews were conducted with a carer or family member of the patient. Interviewees ranged in age from 17 to 69 years. Patients perceived that many healthcare providers do not have the "knowledge" or “interest” to manage PWE. Care tends to be reactive, fragmented and/or polarised between services. Waiting times for specialist review was the primary concern with individuals reporting increased negative psychological responses e.g. "fear, worry, depression". The majority accept passivly such protracted waiting times. Patient’s knowledge regarding lifestyle, psycho-social issues and disease management varied dramatically. Significant work related issues and stigmatisation was reported by three PWE including a secondary school teacher who was asked to “consider your position” by the school principal after having a seizure in “front of the class”. Females reported little engagement with health services specific to their epilepsy during pregnancies. PWE tended to have a vague understanding or insight into the availability or function of patient support groups. They frequently “worried” about the impact of having “seizures” in front of their children who are often the only witness to seizure activity. Patient’s experiences of their journey of care were not constant; could change over time and in some experiences became less important dependent on the severity of their symptoms. Conclusions: This study has provided a unique perspective and revealed import insights into the challenges experience by PWE in Ireland. Together with other research this study can contribute to re-structuring epilepsy services in Ireland so that they become more patient focused.