Authors :
Presenting Author: Clio Rubinos, MD, MS – University of North Carolina
Arthor Smith Ayala, BA – University of North Carolina; Vyas Viswanathan, MD – University of North Carolina; Vineet Punia, MD, MS – Cleveland Clinic; Adithya Sivaraju, MD – Yale University; Sahar Zafar, MD – Massachusetts General Hospital; Neishay Ayub, MD – Rhode Island Hospital, Brown University
Rationale:
Acute symptomatic seizures (ASyS) are common in critically ill patients. It is unknown how ASyS affects posthospitalization self-reported health and quality of life.
Methods:
Qualitative open-ended questions were conducted in 24 patients focusing on topics such as hospitalization, quality of life (Qol), mood, anti-seizure medication (ASMs) use, and their experiences and concerns since discharge. An analytical code book was created that contained both deductive and inductive codes. Two independent reviewers (NA and CR) coded the responses, identifying key concepts and themes. Regular meetings were held between the reviewers to compare codes, introduce new codes, and address any discrepancies. In cases where a consensus was not reached, SZ acted as an adjudicator and reviewed the coding to ensure consistent application of the codes. The final codes were applied and thematic analysis conducted. Summaries for all relevant codes were written by reviewers and used to develop the themes reported here.
Results:
Open-ended questions are seen in Table 1. Respondents reported ASyS impacted their mood and Qol by affecting their ability to work, drive, and socialize, creating a fear of seizure recurrence and suffering from side effects of ASMs. They reported concerns about achieving personal goals, such as baseline social activity, working, and driving. At follow-up clinic visits, participants hope to understand better their disease process and the need for anti-seizure medication. The primary concern following a seizure episode is the potential for the recurrence of seizures and their severity. While most patients were aware that ASMs were prescribed to prevent seizures, it is interesting to note that 25% of the patients did not know the specific reason behind their prescription of ASMs. Almost all patients reported that their mood was affected after ASyS, and up to 50% of the patients expressed concerns regarding ASMs and requested to be gradually tapered.
Conclusions:
Our findings identified patient-related outcome domains specific to ASyS that are not captured by commonly used quality QoL questionnaires. This highlights the need for further research to develop ASyS-specific patient-reported outcome measures.
Funding: American Epilepsy Society Structural Grant