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While 65% of patients indicated that they no longer have epilepsy, only a quarter of the study population were actually completely free of seizures postoperatively.
Sarah Wilson, PhD
Improvements in psychosocial factors and health-related quality of life (HRQOL) are key to a patient’s post-epilepsy surgery perception of treatment outcome, according to findings presented at the 2019 International Epilepsy Congress, June 22-26, in Bangkok, Thailand.
While much research has focused on and identified the short-term benefits of epilepsy surgery in the 2 to 5 years after intervention, in terms of patient satisfaction and HRQOL, little is known about how patient perceptions of their disease and treatment are associated with overall seizure outcome, mood, HRQOL, and psychosocial functioning 15 to 20 years postsurgery.
In an effort to better understand how perceptions of satisfaction and regret affect long-term functioning, researchers led by Sarah Wilson, PhD, professor and head, Melbourne School of Psychological Sciences at the University of Melbourne in Australia, collected detailed data on psychosocial outcomes, including patient perception of their disease, satisfaction with surgery, and perceived improvements in psychosocial functioning through the Living with Epilepsy Program, a novel, online, interactive program that explores patients’ experience with epilepsy and its treatment. The investigators also assessed HRQOL measured by the short-form Quality of Life in Epilepsy survey (QOLIE-31), depressive symptoms as measured by the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), anxiety symptoms measured by the Patient Health Questionnaire for Generalized Anxiety Disorders-7 Item (PHQ-GAD 7), and seizure outcomes.
Ultimately, 32 patients with anterior temporal lobectomy (19 women; mean age, 49.3), of which 20 were left-sided, were included in the study. Clinical information was collected from medical records, while participants completed an interactive online survey to collect data on related epilepsy topics. Clinical characteristics included mean age at onset (11.4 years); mean age at surgery (31.3 years); mean age at follow-up (49.3 years); and mean length of follow-up (17.8 years).
Overall, the researchers found that 4 components contributed to patient perceptions: a positive epilepsy identity; a sense that surgery was a cure; epilepsy advocacy; and epilepsy stigma.
Satisfaction was unrelated to any of the stated perceptions, as 94% (30/32) of participants expressed that they were satisfied and no one reported feeling regretful about their decision to undergo epilepsy surgery.
Notably, while 65% of patients indicated that they no longer have epilepsy, only a quarter of the study population were actually completely free of seizures postoperatively. Those with a stronger sense of being cured of their epilepsy had higher patient-perceived improvements in psychosocial outcomes and better HRQOL (r =.046; P <.05). The researchers noted that sense of cure also mediated the association between seizure outcome and HRQOL, with those with a stronger sense of cure having better seizure outcomes and less medication burden.
All told, a stronger sense of being cured of epilepsy was tied to greater improvements in psychosocial factors and HRQOL, with a higher sense of cure significantly associated with QOLIE-31 scores on social functioning, seizure worry, and medication concerns (all P <.01).
Specifically, feedback from the Living with Epilepsy program identified significant improvements in independence, seizure frequency, medication burden, and patients’ ability to drive (all P <.05).
The finding highlight “the important role of the patient's subjective interpretation of treatment outcome,” Wilson and colleagues concluded.
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Coleman H, McIntosh A, Wilson S. Living with epilepsy: patient perceptions of their epilepsy and its treatment 15 to 20 years after epilepsy surgery. Presented at: 2019 International Epilepsy Congress. June 22-26, 2019; Bangkok, Thailand.