Summary:Purpose: To investigate health-related quality of life (HRQOL) in relation to seizure outcome as part of a multicenter follow-up of epilepsy surgery in Sweden.Methods: A battery including'the SF-36 Health Survey and the Hospital Anxiety and Depression scale (HAD) was distributed to all patients older than 16 years. Mean follow-up time was 4 years (range, 2-13 years) and response rate, 91% (103 of 113 patients). HRQOL data were related to seizure frequency and severity (Chalfont Seizure Severity Scale).Results: Seventy-six percent considered their global health to be better than it was before surgery. Degree of improvement in seizure control correlated with improved satisfaction with health (Spearman's r = 0.44). Higher SF-36 scores (higher HRQOL ratings) correlated with percentage reduction of seizure frequency for all scales and was strongest for perception of general health (Spearman's r = 0.46). When the patients were divided into four categories [A, completely seizure free (n = 29); B, seizure free with aura (n = 18); C, 275% reduction in seizure frequency (n = 24); and D, <75% reduction in seizure frequency (n = 32)], a strong positive association was found between higher SF-36 scores (with the exception of physical functioning) and better seizure control. Health-related limitations in role performance differentiated best between the outcome categories. For patients with 2 7 5 % reduction in seizure frequency, low seizure severity correlated with higher HRQOL ratings for scales measuring social function, vitality, and mental health. Depression levels (HAD scale scores) were on average low. Anxiety (HAD) increased significantly from A to D.Conclusions: HRQOL seems to be scored as a continuum in relation to seizure frequency. Seizure severity measures give complementary information.

Adult patients who are seizure-free 2 years after resective epilepsy surgery are most likely to still be seizure-free 10 years later. Most are working and have obtained a driving license.

ObjectiveTo evaluate health-related quality of life (HRQOL), mood, and patient satisfaction in epilepsy surgery candidates before and 2 years after epilepsy surgery or presurgical investigation.MethodsIn this prospective study of 141 patients, 96 underwent surgery and 45 did not. Questionnaires at baseline and at 2-year follow-up included the generic 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression scale (HAD), and operated patients answered patient satisfaction questions. SF-36 scores were compared with scores from a matched sample from the Swedish norm population. Numbers were calculated of patients achieving a minimum important change (MIC) in the SF-36 Physical Composite Summary (PCS) and Mental Composite Summary (MCS).ResultsAt baseline, patients had significantly lower values than the norm on all SF-36 domains. At follow-up, operated patients were divided into seizure-free (International League Against Epilepsy [ILAE] class 1 and 2, n = 53) or with continued seizures (n = 43). No differences in baseline HAD or SF-36 values were found between these groups. Seizure-free patients reached the same levels as the norm in all SF-36 domains except Social Function. Operated patients with continued seizures and nonoperated patients had unchanged scores. Fifty-one percent of seizure-free patients had an improvement reaching MIC for PCS and 45% for MCS. Corresponding results for patients with continued seizures were 28% in PCS and 28% in MCS, for nonoperated 33% in PCS and 29% in MCS. HAD anxiety scores improved significantly in only the seizure-free patients. Of all operated patients, 80% were satisfied with having had surgery and 86% considered that they had benefited, whereas 20% thought that surgery caused some harm.SignificanceIn patients who were seizure-free after epilepsy surgery HRQOL normalized and anxiety decreased. Operated patients overwhelmingly considered epilepsy surgery to be beneficial. Nonetheless, only about half of the seizure-free patients achieved important HRQOL improvements, suggesting that seizure freedom does not in and of itself guarantee improved patient well-being.

The majority of patients with epilepsy maintain seizure control during pregnancy. The apparently higher risk of seizures among women treated with oxcarbazepine and the more frequent increases in drug load in the oxcarbazepine and lamotrigine cohorts prompts further studies on relationships with pharmacokinetic changes. Risks associated with status epilepticus appear to be lower than previously reported.

SUMMARYObjective: The aim of this prospective and population-based longitudinal study was to explore patients' expectations before surgery and their experiences both short and long term after epilepsy surgery. Methods: A national sample of adult patients answered open-ended questions preoperatively, 2 years after surgery and at a cross-sectional long-term follow-up (mean 13 years, standard deviation [SD] 1.85). The answers were analyzed by qualitative content analysis. Results: Eighty patients participated in the study. Before surgery, patients experienced a belief in a "normal" life; they hoped for reduction of seizures and medication, a richer social life, and more self-confidence. However, they also experienced anxiety of the unknown. They were afraid of the operation, of continued seizures, and of complications. At both postoperative follow-ups patients experienced increased independence. They had symptom reduction, felt relief from worries and fears, and felt that they had a new life. However, some patients experienced that the operation had changed their life to the worse due to both psychological and neurologic adverse effects, regardless of whether they had obtained seizure freedom or improvement. Significance: Positive experiences of epilepsy surgery dominated, both in the short and long term. However, attention must be paid to negative expectations before and negative experiences after surgery in order to provide individual support and information. This should increase the possibility for patients to have realistic hopes before surgery and to find coping strategies in the new life situation after surgery.

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At the group level, HRQOL was stable 14 years after surgery compared to after 2 years. Social Functioning and Mental Health were still below, but other domains were similar to the normative sample. Individual patterns did not follow seizure outcome changes, indicating that multiple factors are important for long-term HRQOL.