Adult patient perspectives of the unknowns of living with epilepsy - results from a focus group study.

Background/Objectives: Epilepsy is one of the most common and debilitating neurological conditions that affects nearly 50 million people worldwide, yet there remains a stigma around this condition, which can impact the information-seeking behaviours of patients. As the Brain and Mental Health Research Clinics develop a website about registry-based research, including patient-facing areas, it is important to understand how patients look for information, and the types of information they are seeking out. The objective of this study was to encourage conversation and understand the patient perspectives of existing knowledge gaps between epilepsy patients and the resources they use to obtain information. Methods: A total of thirteen patients (mean (SD) age = 46.4 (16.1) years) from the Calgary Comprehensive Epilepsy Program Registry and four caregivers participated in one of the three focus groups completed in order to meet our aims. There were eight female and five male patients. A semi-structured guide was used to understand the patients’ experiences, top concerns, informational resources currently used, and resources or knowledge that patients felt are lacking. The focus groups were audio-recorded and transcribed verbatim. Thematic content analysis was conducted by two researchers who independently open-coded the transcripts using NVivo 11. The final analysis was done by team discussion and ongoing analysis of the codes to create themes and sub-themes. Results: The major themes that emerged from the data included: 1) daily management; 2) resources; and 3) medications and treatment. For daily management, the participants reported concerns about the effects of epilepsy on day-to-day activities such as driving, working, and the barriers they face in society due to their perceived lack of awareness and education about seizure management in the general public. The participants felt negatively impacted by the stigma and compared their experience with epilepsy with other disorders such as cancer or diabetes which they feel are much more accepted in society. The geographical location of the patient also plays a role in the support they receive for epilepsy management, with participants citing challenges and feelings of isolation in rural areas. To acquire more information about epilepsy, participants reported that they primarily asked their physicians or searched online. However, despite the conveniences of the internet, some individuals felt the volume and variation of quality of online information was overwhelming. Instead, they would prefer to go to trusted resources that are provided by healthcare professionals or websites affiliated with hospitals or universities. Updated information on medication, side effects, and research are examples of resources the patients would like to see provided on such websites. Conclusion: Overall, it is clear from our focus groups that resources and support for self-management and day-to-day living for individuals with epilepsy is paramount to reduce knowledge gaps. Not only is it important to provide daily management and medication information to patients through trusted organizational resources, but it is equally important to increase public awareness about epilepsy and seizure disorders to reduce the stigma attached to these conditions.
Patient registries, Knowledge gaps, Epilepsy
Lee, J. Y. Y., Gelfand, J., Khan, S., Crooks, R. E., Josephson, C. B., Wiebe, S., ... Roach, P. M. (2019). "Adult patient perspectives of the unknowns of living with epilepsy - results from a focus group study". University of Calgary, Calgary, AB.