Callosotomy in children - Parental experiences reported at long-term follow-up.

Callosotomy is a palliative surgery method for selected individuals with severe, drug-resistant epilepsy. The aim of this retrospective study was to explore parental experiences of the family's life situation before and long after their child had undergone callosotomy. Semistructured interviews of the parents of 12 children were analyzed using a combination of inductive and deductive qualitative content analysis. Before surgery, parents felt that they lived in a chaotic bubble with an unbearable situation; their child had severe and frequent seizures and had to be looked after constantly. Most parents were both satisfied and dissatisfied with the given support and information. However, if the child did not improve after surgery, parents often felt that the information before surgery had not been adequate. After surgery, they found a glimpse of hope. They felt that the family got a new life; the reduced seizure severity led to a better life situation for the family. The support was described as both good and poor. The family life situation was complex, and even if they were partly satisfied with the support, it was still not enough. However, the life situation was also very stressful because of remaining seizures, behavioral problems, and sometimes, adverse effects of surgery. The families lived in disappointment and difficulty and had to fight for their rights. This indicates that these families need more information and social service coordination both before and long after surgery. They need not only tools to manage the child's disabilities but also substantial help to care for the child and to receive the social support they need.

[50 percent of patients who had epilepsy surgery are seizure-free]. / Hälften är långsiktigt fria från anfall efter epilepsikirurgi - Personer med läkemedelsresistent epilepsi bör remitteras till regionala epilepsiteam.

About one third of patients with epilepsy do not become seizure-free despite medication. For some, resective epilepsy surgery is the treatment of choice. There are three randomized controlled trials, with positive results at a follow-up of 1-2 years: two on temporal lobe resections on adults and young people and one on all types of epilepsy surgery on children. Since 1990 all epilepsy surgery procedures in Sweden are reported to the Swedish Epilepsy Surgery Register, now with data on almost 1500 patients. Two years after surgery about 50% of adults and children are seizure-free, and another 10% have been so during the last year. After 10 seizure-free years 40% of adults and 80% of children have stopped medication. All patients with pharmacoresistant focal epilepsy should be referred to the regional epilepsy team for evaluation and possibly epilepsy surgery. Small children should be referred to the regional pediatric team early, since the epileptic seizures may hamper their development.

Health-related quality of life and emotional wellbeing improve in parents after their children have undergone epilepsy surgery - A prospective population-based study.

The objective was to compare parental health-related quality of life (HRQoL), anxiety, and depression at baseline and 2years after epilepsy surgery in a population-based series of children and young people who underwent surgery between 1995 and 1999 and to compare with population norms. Fifty mothers and 44 fathers of 50 children and young people (age: 1-20years) completed the Medical Outcome Study 36-item Short Form Health Survey (SF-36) and Hospital Anxiety and Depression (HAD) scale at baseline and at follow-up. Changes in SF-36 and HAD scores between baseline and follow-up were compared using Wilcoxon signed rank test. Scores on the SF-36 were compared with a reference sample from the Swedish population using the Mann Whitney U test. Factors associated with changes in SF-36 and HAD scores were analyzed using regression analysis. On the SF-36, the Physical Component Summary (PCS) scores were not significantly different between baseline and follow-up for mothers (p=0.177) or fathers (p=0.054). Mental Component Summary (MCS) scores improved significantly for mothers (p=0.008) and fathers (p<0.001). Mothers' baseline scores on seven of eight SF-36 domains were significantly lower than reference values. Scores at follow-up improved on these seven domains, but on three domains (primarily mental health domains), scores remained significantly lower than reference values. Fathers' baseline scores on four of eight SF-36 domains were significantly lower than reference values, and scores at follow-up remained significantly lower on the four primarily mental health domains. The proportions of mothers and fathers classified as HAD-A and HAD-D cases decreased at follow-up but did not reach statistical significance. Child epilepsy variables were in the main not associated with parental outcomes, but a greater reduction in AEDs was associated with a greater reduction in PCS scores. Parents of young people/children with seizure-free outcome were significantly more likely to have a reduction in depression scores than parents of young people/children with continued seizures. Many aspects of HRQoL and emotional wellbeing improved at 2-year follow-up for parents after epilepsy surgery on their children. There is a need to comprehensively identify factors associated with changes in parental HRQoL and emotional wellbeing to provide adequate support.

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

OBJECTIVE: To evaluate health-related quality of life (HRQOL) and emotional well-being in resective epilepsy surgery and nonoperated patients at long-term follow-up. METHODS: This is a prospective cohort study where patients undergoing presurgical work-up during 1995-1998 completed the Short-Form Health Survey (SF-36) and the Hospital Anxiety and Depression scale (HAD) at baseline, and 2 and 14 years after resective surgery or presurgical evaluation (nonoperated patients). SF-36 scores were compared to a normative population. Proportions of patients reaching HRQOL changes of minimum clinically important difference (MCID) were calculated. RESULTS: At 14-year follow-up, operated patients scored equal to or better than the normative sample on all SF-36 domains except Social Functioning and Mental Health. Physical component summary (PCS) was better and mental component summary (MCS) was worse than for the normative sample. Nonoperated patients scored worse than the normative sample on five of eight domains, and on PCS and MCS. Change in seizure status from 2 to 14 years did not affect PCS or MCS means. Improvement reaching MCID from baseline to long-term was seen in 50% (PCS) and 47% (MCS) of operated and in 33% (PCS) and 38% (MCS) of nonoperated patients. Worsening was seen in 18% (PCS) and 22% (MCS) of operated and in 38% (PCS) and 38% (MCS) of nonoperated patients. Differences between groups were nonsignificant. HAD scores did not differ between groups, and the numbers of possible or probable cases were low. Patient satisfaction with surgery was higher in operated seizure-free patients. Only 5% of all operated patients considered surgery not to be overall beneficial. SIGNIFICANCE: 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.

Long-term outcomes of surgical treatment for epilepsy in adults with regard to seizures, antiepileptic drug treatment and employment.

PURPOSE: There is Class I evidence for short-term efficacy of epilepsy surgery from two randomized controlled studies of temporal lobe resection. Long-term outcome studies are observational. The aim of this narrative review was to summarise long-term outcomes taking the study methodology into account. METHODS: A PubMed search was conducted identifying articles on long-term outcomes of epilepsy surgery in adults with regard to seizures, antiepileptic drug treatment and employment. Definitions of seizure freedom were examined in order to identify the proportions of patients with sustained seizure freedom. The quality of the long-term studies was assessed. RESULTS: In a number of high-quality studies 40-50% of patients had been continuously free from seizures with impairment of consciousness 10 years after resective surgery, with a higher proportion seizure-free at each annual follow-up. The proportion of seizure-free adults in whom AEDs have been withdrawn varied widely across studies, from 19-63% after around 5 years of seizure freedom. Few long-term vocational outcome studies were identified and results were inconsistent. Some investigators found no postoperative changes, others found decreased employment for patients with continuing seizures, but no change or increased employment for seizure-free patients. Having employment at baseline and postoperative seizure freedom were the strongest predictors of employment after surgery. CONCLUSIONS: Long-term studies of outcomes after epilepsy surgery are by necessity observational. There is a need for more prospective longitudinal studies of both seizure and non-seizure outcomes, considering individual patient trajectories in order to obtain valid outcome data needed for counselling patients about epilepsy surgery.

Prospective and longitudinal long-term employment outcomes after resective epilepsy surgery.

OBJECTIVE: To investigate long-term employment outcomes after resective epilepsy surgery in a national population-based cohort of adults. METHODS: In the Swedish National Epilepsy Surgery Register, all adults who were operated with resective epilepsy surgery from 1995 to 2010 were identified. Two-year follow-up was available for 473/496, 5-year follow-up for 220/240, 10-year follow-up for 240/278, and 15-year follow-up for 85/109 patients. RESULTS: There were no significant changes in employment outcome over time at group level, but for those with full-time employment at baseline, 79%, 79%, 57%, and 47% of seizure-free patients were in full-time work at 2-, 5-, 10-, and 15-year follow-up, compared to patients with benefits at baseline, where 16%, 27%, 31%, and 33% of seizure-free patients worked full time at these time points (p = 0.018 at 10 years). More patients with full-time work had ability to drive, a family of their own, and higher educational status than patients in part-time work or on benefits. Univariate predictors for employment at long term were having employment preoperatively, higher education, favorable seizure outcome, male sex, and younger age at surgery. Multivariate predictors were having employment preoperatively, favorable seizure outcome, and younger age. CONCLUSIONS: The best vocational outcomes occurred in seizure-free patients who were employed or students at baseline, which may reflect a higher general psychosocial level of function. Younger age also predicted better employment outcomes and it therefore seems plausible that early referral for surgery could contribute to better vocational outcomes.

A long-term patient perspective after hemispherotomy--a population based study.

PURPOSE: Explore the long-term life situation for Swedish hemispherotomy patients reporting not only seizure outcome but also patients' perspectives on function, quality of life (QoL) and satisfaction with the surgery. METHODS: This population based study uses prospectively collected data from the Swedish National Epilepsy Surgery Register. An independent researcher interviewed patients or parents, using two patient oriented questionnaires. RESULTS: Twenty-nine patients underwent hemispherotomy in Sweden after 1995 and had a five- or ten-year follow-up. At the 2-year follow-up 55% (16/29) were seizure-free since surgery, and 11/29 (38%) were seizure-free at the long term follow up. Twenty-six (90%) participated in this study. Median time to interview was 13.5 years; 9/26 (35%) were seizure-free then; 23% were off antiepileptic medication. In those not seizure-free, seizures were considered mild or moderate; 11% attended mainstream school and 3/12 adults lived independently. Most parents both of seizure-free and non seizure-free patients reported QoL and general health to be very good/good; 73% were satisfied/very satisfied with the hemispherotomy. CONCLUSION: In this series there were more long-term recurrences than previously reported. This might be related to the lower level of function of this cohort and higher percentage of developmental aetiologies compared to other series. However, most hemispherotomy patients have a good QoL in the long run and feel that the operation was worthwhile, even when it did not stop seizures. The majority had persisting impairments. Proxies were not very concerned about seizures, indicating that reduction in seizure frequency and/or severity may be an important gain with hemispherotomy.

Long-term follow-up after epilepsy surgery in infancy and early childhood--a prospective population based observational study.

PURPOSE: To describe 2-year and long-term outcomes (five or ten years) after resective epilepsy surgery in children operated before the age of four years. METHODS: This prospective, population based, longitudinal study is based on data from the Swedish National Epilepsy Surgery Register 1995-2010. The following variables were analysed: seizure frequency, antiepileptic drug treatment (AED), neurological deficits, type of operation, histopathological diagnosis and perioperative complications. RESULTS: During the study period 47 children under four years had resective surgery. A majority had seizure onset within the first year of life, and the median age at surgery was two years and one month. Two thirds had neurodevelopmental abnormalities. Temporal lobe resection, frontal lobe resection and hemispherotomy predominated. A majority had malformations of cortical development. There was one major perioperative complication. At the 2-year follow-up, 21/47 children (45%) were seizure free, eight of whom were off medication. At the long-term follow-up, 16/32 (50%) were seizure-free and 11 of them off medication. Another ten (31%) had ≥75% reduction in seizure frequency. Fourteen children (44%) had sustained seizure freedom from surgery to the long-term follow-up. CONCLUSION: This is the first prospective, population based, longitudinal study to show that a favourable seizure outcome is achievable in a majority of infants and young children undergoing resective epilepsy surgery and that the improvements are consistent over time. Many can also stop taking AEDs. The findings emphasise the importance of early referral to epilepsy surgery evaluation in cases of medically intractable epilepsy in infants and young children.

Complications to invasive epilepsy surgery workup with subdural and depth electrodes: a prospective population-based observational study.

OBJECTIVE: In some patients who undergo presurgical workup for drug-resistant epilepsy invasive seizure monitoring is needed to define the seizure onset zone and delineate eloquent cortex. Such procedures carry risks for complications causing permanent morbidity and even mortality. In this study, prospective data on complications in a national population-based sample were analysed. DESIGN: Complication data from the prospective Swedish National Epilepsy Surgery Register were analysed for 271 patients in whom therapeutic surgery was preceded by invasive monitoring 1996-2010. RESULTS: Complications occurred in 13/271 patients (4.8%). Subdural grids carried the highest risk of complications (7.4%). There was no surgical mortality or permanent morbidity. Subdural haematomas were most common (n=7) followed by epidural haematomas (n=3). Valproate treatment and having a haematoma was associated with an OR of 1.53 (CI 0.38 to 6.12) compared to having a haematoma without valproate treatment. Having a complication during invasive monitoring was associated with a significant OR of 6.27 (CI 1.32 to 29.9) of also having a complication at therapeutic surgery compared to the risk of having a complication only at surgery. CONCLUSIONS: In this prospective population-based epilepsy surgery series, the most common complications were haematomas, and subdural grids carried the highest risk. Close supervision and rapid interventions led to avoidance of permanent morbidity. The clinical implications of the slightly increased risk of haematomas with valproate treatment needs further investigation as does the finding of an increased risk for complications at epilepsy surgery for patients who had a complication during invasive monitoring.

Long-term outcomes of epilepsy surgery in Sweden: a national prospective and longitudinal study.

OBJECTIVE: To investigate prospective, population-based long-term outcomes concerning seizures and antiepileptic drug (AED) treatment after resective epilepsy surgery in Sweden. METHODS: Ten- and 5-year follow-ups were performed in 2005 to 2007 for 278/327 patients after resective epilepsy surgery from 1995 to 1997 and 2000 to 2002, respectively. All patients had been prospectively followed in the Swedish National Epilepsy Surgery Register. Ninety-three patients, who were presurgically evaluated but not operated, served as controls. RESULTS: In the long term (mean 7.6 years), 62% of operated adults and 50% of operated children were seizure-free, compared to 14% of nonoperated adults (p < 0.001) and 38% of nonoperated children (not significant). Forty-one percent of operated adults and 44% of operated children had sustained seizure freedom since surgery, compared to none of the controls (p < 0.0005). Multivariate analysis identified ≥30 seizures/month at baseline and long epilepsy duration as negative predictors and positive MRI to be a positive predictor of long-term seizure-free outcome. Ten years after surgery, 86% of seizure-free children and 43% of seizure-free adults had stopped AEDs in the surgery groups compared to none of the controls (p < 0.0005). CONCLUSIONS: This population-based, prospective study shows good long-term seizure outcomes after resective epilepsy surgery. The majority of the patients who are seizure-free after 5 and 10 years have sustained seizure freedom since surgery. Many patients who gain seizure freedom can successfully discontinue AEDs, more often children than adults. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that more patients are seizure-free and have stopped AED treatment in the long term after resective epilepsy surgery than nonoperated epilepsy patients.