Health‐related quality of life and emotional well‐being after epilepsy surgery: A prospective, controlled, long‐term follow‐up

Edelvik, Anna; Taft, Charles; Ekstedt, Gerd; Malmgren, Kristina

doi:10.1111/epi.13874

Cited by 33 publications

(27 citation statements)

References 38 publications

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“…This underlines our study's relevance -particularly for the NRP. Our proportion of included NRP (10%) is similar to that of a comparable recent questionnaire study without need for the patients to travel to the epilepsy center (21% [7]). Of note, our follow-up period was longer (16-21 years as compared to 9-17 years [5]).…”

Section: Resultssupporting

confidence: 80%

“…So far, only a limited number of studies report seizure and cognitive outcome at long-term intervals, i.e., > 5 years postoperatively [6]. In spite of recent publications on the very long-term psychosocial [7] and cognitive [8] outcome after epilepsy surgery, the comprehensive very long-term (i.e., ≥15 years) assessment including cognitive, seizure, and subjective (i.e., psychosocial and mood) variables after TLE surgery has been broadly neglected in the literature so far. There are two potential hypotheses: Ongoing seizures may trigger an accelerated cognitive decline in the course of a chronic epilepsy, whereas seizure-freedom (or longer seizure-free intervals) may protect from this [9][10][11].…”

Section: Introductionmentioning

confidence: 99%

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Very long-term outcome in resected and non-resected patients with temporal lobe epilepsy with medial temporal lobe sclerosis: A multiple case-study

Grewe

Schulz

Woermann

et al. 2019

Seizure

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A B S T R A C TPurpose: To investigate the very long-term (i.e., ≥15 years) seizure, cognitive and psycho-social outcomes in resected patients (RP) with TLE compared to control patients not having undergone epilepsy surgery. Methods: We applied a multiple case-study design including three non-resected patients (NRP) who were compared to a group of six RP. The latter were matched to the NRP according to clinical-demographic data. Outcome measures were various seizure, cognitive, and psycho-social variables. Results: Patients were 56-72 years old. Seizure and AED outcome was more favourable among RP. RP reported better self-perceived overall health but higher subjective memory complaints. Upon formal neuropsychological testing, RP presented with lower verbal memory scores. Very long-term memory decline was evident in left-sided RP with good baseline memory scores, while RP with lower baseline performance, right-sided RP and NRP remained stable. Seizure-freedom had remarkable effects on the relationship between objective and subjective outcome: seizure-free patients, in general, subjectively reported the best psychosocial and cognitive outcomeirrespective of neuropsychological test results. Conclusion: Our study suggests positive effects of TLE surgery in the very long-term course of ≥15 years postoperatively. Long-term seizure-freedom appears to have the strongest impact on patients' subjectively perceived psycho-social and cognitive outcome and may even outweigh actual memory disturbances and/or decline. Overall, our data do not support the assumption of a generally accelerated cognitive decline in patients with TLE.

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Section: Resultssupporting

confidence: 80%

Section: Introductionmentioning

confidence: 99%

Very long-term outcome in resected and non-resected patients with temporal lobe epilepsy with medial temporal lobe sclerosis: A multiple case-study

Grewe

Schulz

Woermann

et al. 2019

Seizure

View full text Add to dashboard Cite

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“…Based on minimally clinically important differences as reported in the literature, HRQoL physical and mental component scores were dichotomized as follows: poor physical component score was defined as a score < 46.4 and poor mental component score as a score < 47.0 [21]. Impaired neurocognitive functioning was defined as a z-score < 1.5 in at least one out of six domains [22].…”

Section: Discussionmentioning

confidence: 99%

Determinants and predictors for the long-term disease burden of intracranial meningioma patients

et al. 2020

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Introduction Meningioma is a heterogeneous disease and patients may suffer from long-term tumor- and treatment-related sequelae. To help identify patients at risk for these late effects, we first assessed variables associated with impaired long-term health-related quality of life (HRQoL) and impaired neurocognitive function on group level (i.e. determinants). Next, prediction models were developed to predict the risk for long-term neurocognitive or HRQoL impairment on individual patient-level. Methods Secondary data analysis of a cross-sectional multicenter study with intracranial WHO grade I/II meningioma patients, in which HRQoL (Short-Form 36) and neurocognitive functioning (standardized test battery) were assessed. Multivariable regression models were used to assess determinants for these outcomes corrected for confounders, and to build prediction models, evaluated with C-statistics. Results Data from 190 patients were analyzed (median 9 years after intervention). Main determinants for poor HRQoL or impaired neurocognitive function were patients’ sociodemographic characteristics, surgical complications, reoperation, radiotherapy, presence of edema, and a larger tumor diameter on last MRI. Prediction models with a moderate/good ability to discriminate between individual patients with and without impaired HRQoL (C-statistic 0.73, 95% CI 0.65 to 0.81) and neurocognitive function (C-statistic 0.78, 95%CI 0.70 to 0.85) were built. Not all predictors (e.g. tumor location) within these models were also determinants. Conclusions The identified determinants help clinicians to better understand long-term meningioma disease burden. Prediction models can help early identification of individual patients at risk for long-term neurocognitive or HRQoL impairment, facilitating tailored provision of information and allocation of scarce supportive care services to those most likely to benefit.

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“…This is particularly relevant given that adverse effects on HRQOL, mental health, and social functioning, that persist into adulthood, are seen in children that have undergone epilepsy surgery and are seizure free, as well as those that continue to have refractory seizures. 70,71 Children with epilepsy often are reported to be a vulnerable and disempowered patient population. Many experience a loss of freedom and lack of control over their bodies associated with the unpredictable nature of epilepsy.…”

Section: Building Support For Youth With Epilepsy Facing Challenging mentioning

confidence: 99%

The Dilemma of Hemispherectomy for Rasmussen's Encephalitis in a Neurologically Intact Child

Borlot

Yau

Olivieri

et al. 2020

Journal of Pediatric Epilepsy

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Rasmussen's encephalitis is a rare drug-resistant focal epilepsy characterized by progressive hemiparesis, hemianopia, and cognitive decline. Hemispherectomy is currently the only known treatment that can be curative, though expected to cause postoperative motor and visual deficits in children and adolescents. To date, medical treatment with antiseizure medications and immunosuppressive agents can only offer partial, delayed, or temporary alleviation of symptoms. Hence, patients and families are often faced with the difficult decision to consider the possibility of seizure freedom at the cost of incurring permanent deficits. Here, we discussed the unique ethical issues when faced with a cure that can cause harm, and also discussed a shared decision-making approach guided by informed consent, principles of autonomy, and patient-centered values.

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Health‐related quality of life and emotional well‐being after epilepsy surgery: A prospective, controlled, long‐term follow‐up

Cited by 33 publications

References 38 publications

Very long-term outcome in resected and non-resected patients with temporal lobe epilepsy with medial temporal lobe sclerosis: A multiple case-study

Very long-term outcome in resected and non-resected patients with temporal lobe epilepsy with medial temporal lobe sclerosis: A multiple case-study

Determinants and predictors for the long-term disease burden of intracranial meningioma patients

The Dilemma of Hemispherectomy for Rasmussen's Encephalitis in a Neurologically Intact Child

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