Abstracts

Evaluating Patient’s Understanding and Perceptions Throughout the Epilepsy Surgical Pathway

Abstract number : 1042
Submission category : 15. Practice Resources
Year : 2020
Submission ID : 2423375
Source : www.aesnet.org
Presentation date : 12/7/2020 1:26:24 PM
Published date : Nov 21, 2020, 02:24 AM

Authors :
Joseph Newman, Kansas University Medical Center; Mary Ann Kavalir - Kansas University Medical Center; Susan Hornberger - Kansas University Medical Center; Patrick Landazuri - Kansas University Medical Center; Utku Uysal - Kansas University Medical Center;


Rationale:

Rationale:
Epilepsy surgery can be an effective treatment for patients with drug-resistant epilepsy, a disease that effects one third of the epilepsy population. Lack of knowledge, understanding, and misconceptions about the treatment process can become a burden for those undergoing pre-surgical testing. There are limited resources that are available outside of explanations during clinical visits with epilepsy providers.  Our objective was to determine if our education booklet which explains each element of the surgical pathway at a 5th grade reading level, enhanced the patient’s understanding of the epilepsy surgical process.
Method:
Methods: In 2019, The University of Kansas Health System completed 122 epilepsy surgeries consisting of resective, palliative (corpus callosotomy, multiple subpial transection), ablative (laser interstitial thermal therapy, radiofrequency ablation), neuromodulation (responsive neurostimulation and deep brain stimulation [omitting vagal nerve stimulation]), and stereotactic placement of intracranial depth electrodes. We sent our survey to 50 patients who underwent surgery in 2019 to determine their overall understanding and perception of the surgical pathway. Twenty-five patients underwent surgery before our education booklet was developed and twenty-five participants received the finalized booklet during their pre-surgical evaluation phase. All patients received a copy of the booklet prior to receiving the survey for their review. The survey consisted of nine questions, five of which focused on feedback regarding the overall content and value of the booklet. Three questions collected patient-specific details (age of diagnosis, age at the time of surgery, surgical type), and the final question was open-ended allowing participants to provide specific feedback.  The questionnaire was sent electronically via the health system’s patient portal and was asked to be completed and returned within a selected time period. All respondents remained anonymous without any identifying factors.
Results:
Results: Ten participants completed the questionnaire within a limited time frame. After preliminarily analyzing the data, 60% of the participant’s age range were between 30-39 and 50-59 years old (figure 1). Fifty percent of the participants did not receive the booklet prior to surgery but were able to review it prior to completing the questionnaire. The remaining 50% did receive the booklet during their pre-surgical testing. Collectively, out of nine participants, 88% thought the booklet enhanced the provider’s explanation of presurgical testing and surgery. 77% of those surveyed felt they would have achieved a better understanding from the booklet, had they not received it during their pre-surgical testing. Six participants provided feedback regarding their overall perception of the educational booklet whereas four participants skipped the question entirely. 
Conclusion:
Conclusion: Our preliminary results indicated a significant benefit to providing additional resources for epilepsy patients completing the epilepsy surgical pathway. A few limitations to this survey were identified and include a lack of participants and their understanding of what type of surgery was performed.  The remaining results can be utilized to target specific age groups, improve knowledge gaps and resource content, and overall availability of educational resources pertaining to the epilepsy surgical pathway. 
Funding:
:None
Practice Resources