| 1. |
- Andersson, Klara, et al.
(författare)
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Multiple stigma among first-generation immigrants with epilepsy in Sweden
- 2021
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Ingår i: Epilepsy and Behavior. - : Elsevier BV. - 1525-5050. ; 115
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate the meaning of stigma among first-generation immigrants with epilepsy in Sweden. Methods: Data were collected by individual face-to-face interviews with 25 first-generation immigrants with epilepsy from 18 different countries. Interviews were recorded, transcribed verbatim, and analyzed systematically using a hermeneutic approach. Results: Multiple aspects of stigma were associated with epilepsy, immigration, and socioeconomic deprivation. The main theme “It is a fight to be appreciated as a person and member of society” illuminated the meaning of stigma in the struggle with a negative self-image and strategies to build self-confidence. The seizure-related fears were amplified by language barriers and a lack of knowledge of the healthcare system that obstructed access to health care. Few close relatives nearby or misconceptions of epilepsy in the family resulted in a lack of support. The stigma of being an immigrant and of socioeconomic deprivation resulted in feelings of being unvalued by the society in addition to feelings of being unvalued in relationships and at work because of epilepsy. The social isolation experienced as a result of immigration was increased due to the presence of perceived stigma due to epilepsy which led people to stay at home in order to conceal their epilepsy. At the same time, to inform others about their epilepsy could reduce seizure-related fears. Employment appeared as a symbol of being a capable person and helped participants gain self-confidence. Conclusions: Barriers to access health care and the exposure to multiple stigma can result in increased seizure-related fears, social isolation, and a lack of support for immigrants with epilepsy. In the context of epilepsy and immigration, stigma was intricately connected to how people perceived themselves as capable and contributing members of society. To reduce the negative influence of stigma, employment appeared vital to build self-confidence and break social isolation. Investigating the patient's experience of stigma may provide healthcare professionals with valuable information on the need for support and priorities in epilepsy management. Public efforts to increase knowledge about epilepsy also among first-generation immigrants would be valuable. © 2020 Elsevier Inc.
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| 2. |
- Andersson, Klara, et al.
(författare)
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Perceived stigma in adults with epilepsy in Sweden and associations with country of birth, socioeconomic status, and mental health
- 2022
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Ingår i: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050. ; 136
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Tidskriftsartikel (refereegranskat)abstract
- Background: Stigma contributes to negative health outcomes and amplifies health disparities in epilepsy. This study aimed to investigate associations of perceived stigma with the country of birth and socioeco-nomic status (SES). Methods: This is a cross-sectional questionnaire study. Participants were recruited consecutively from three demographically different neurology outpatient clinics in the southwest of Sweden. Participants responded to a questionnaire concerning their epilepsy, country of birth, mother tongue, and different SES-variables. The Neuro-QOL stigma scale and the Jacoby stigma scale were applied to assess stigma and the Hospital Anxiety and Depression Scale (HADS) and PROMIS Mental Health scale were applied to assess mental health. Results: In total 161 adults with epilepsy were included in the cohort. The median Neuro-QOL stigma score was 48.3, and was higher among foreign-born than in native-born participants (foreign-born in non-European country 52.3, in other European country 49.8, and in native-born 47.0, p = 0.003). Other factors associated with Neuro-QOL were seizure frequency last year (>= 2 seizures 52.4 compared to 1 sei-zure 50.9 and no seizures 44.3, p < 0.001), having had seizures in public (yes 50.9 compared to no 44.7, p = 0.035), HADS depression score >= 11 (57.4 compared to 47.8 for score <11 points, p < 0.001), HADS anx-iety score >= 11 (53.5 compared to 46.8 for score <11 points, p < 0.001), and lower PROMIS Mental Health score (42.9 for PROMIS < 40 compared to 54.4 for PROMIS > 60, p < 0.01). A stepwise multiple regression analysis indicated that having had seizures the last year increased the average Neuro-QOL stigma score with 5.89 and appeared as the most determining factor for the Neuro-QOL stigma score among the vari-ables investigated. Conclusions: It is important that the concerns of foreign-born patients are acknowledged and that the focus of seizure control and the detection and treatment of comorbidities are prioritized in the manage-ment of epilepsy and perceived stigma. (c) 2022 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).
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| 3. |
- Andersson, Klara, et al.
(författare)
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Socioeconomic outcome and access to care in adults with epilepsy in Sweden: A nationwide cohort study.
- 2020
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Ingår i: Seizure. - : Elsevier BV. - 1532-2688 .- 1059-1311. ; 74, s. 71-76
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Tidskriftsartikel (refereegranskat)abstract
- Epilepsy has well-documented associations with low income and low education levels, but the impact of a patient's socioeconomic standing (SES) on the effects of epilepsy have been less studied.We performed a register-based cross-sectional study and asked if SES was associated with more severe epilepsy or limited access to care in Sweden, where health care is universal, and if socioeconomic outcomes (employment and income) differed for persons with epilepsy (PWE) with different levels of educational attainment. The study cohort consisted of all adult patients with an epilepsy diagnosis in the Swedish patient register in 2000-2015 (n = 126,406) and controls (n = 379,131) matched for age, gender, and place of birth.Somatic and psychiatric comorbidities were more common in PWE, while education and income levels were lower. Among PWE, hospitalizations were more common in persons with lower income or education. Having at least one prescription written by a neurologist in the study period was more common in the high-income and high-education groups. Finally, although low educational attainment was associated with low levels of income and inversely associated with employment in both persons with epilepsy and controls, regression analyses demonstrated that these associations were much more noticeable in cases than controls.We conclude that both the severity and consequences of epilepsy are greater in persons of low SES, even in a country with universal health care. This indicates that universal access may not be sufficient to mitigate socioeconomic inequity in epilepsy.
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| 4. |
- Bjellvi, Johan, et al.
(författare)
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Classification of complications of epilepsy surgery and invasive diagnostic procedures: A proposed protocol and feasibility study
- 2021
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Ingår i: Epilepsia. - : Wiley. - 0013-9580 .- 1528-1167. ; 62:11, s. 2685-2696
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Tidskriftsartikel (refereegranskat)abstract
- Objective In epilepsy surgery, which aims to treat seizures and thereby to improve the lives of persons with drug-resistant epilepsy, the chances of attaining seizure relief must be carefully weighed against the risks of complications and expected adverse events. The interpretation of data regarding complications of epilepsy surgery and invasive diagnostic procedures is hampered by a lack of uniform definitions and method of data collection. Methods Based on a review of previous definitions and classifications of complications, we developed a proposal for a new classification. This proposal was then subject to revisions after expert opinion within E-pilepsy, an EU-funded European pilot network of reference centers in refractory epilepsy and epilepsy surgery, later incorporated into the ERN (European Reference Network) EpiCARE. This version was discussed with recognized experts, and a final protocol was agreed to after further revision. The final protocol was evaluated in practical use over 1 year in three of the participating centers. One hundred seventy-four consecutive procedures were included with 35 reported complications. Results This report presents a multidimensional classification of complications in epilepsy surgery and invasive diagnostic procedures, where complications are characterized in terms of their immediate effects, resulting permanent symptoms, and consequences on activities of daily living. Significance We propose that the protocol will be helpful in the work to promote safety in epilepsy surgery and for future studies designed to identify risk factors for complications. Further work is needed to address the reporting of outcomes as regards neuropsychological function, activities of daily living, and quality of life.
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| 5. |
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| 6. |
- Bjellvi, Johan, et al.
(författare)
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Risk Factors for Seizure Worsening After Epilepsy Surgery in Children and Adults: A Population-Based Register Study.
- 2020
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Ingår i: Neurosurgery. - : Ovid Technologies (Wolters Kluwer Health). - 1524-4040 .- 0148-396X. ; 87:4, s. 704-711
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Tidskriftsartikel (refereegranskat)abstract
- Increased seizure frequency and new-onset tonic-clonic seizures (TCS) have been reported after epilepsy surgery.To analyze potential risk factors for these outcomes in a large cohort.We studied prospectively collected data in the Swedish National Epilepsy Surgery Register on increased seizure frequency and new-onset TCS after epilepsy surgery 1990-2015.Two-year seizure outcome was available for 1407 procedures, and data on seizure types for 1372. Increased seizure frequency at follow-up compared to baseline occurred in 56 cases (4.0%) and new-onset TCS in 53 (3.9%; 6.6% of the patients without preoperative TCS). Increased frequency was more common in reoperations compared to first surgeries (7.9% vs 3.1%; P=.001) and so too for new-onset TCS (6.7% vs 3.2%; P=.017). For first surgeries, binary logistic regression was used to analyze predictors for each outcome. In univariable analysis, significant predictors for increased seizure frequency were lower age of onset, lower age at surgery, shorter epilepsy duration, preoperative neurological deficit, intellectual disability, high preoperative seizure frequency, and extratemporal procedures. For new-onset TCS, significant predictors were preoperative deficit, intellectual disability, and nonresective procedures. In multivariable analysis, independent predictors for increased seizure frequency were lower age at surgery (odds ratio (OR) 0.70 per increasing 10-yr interval, 95% CI 0.53-0.93), type of surgery (OR 0.42 for temporal lobe resections compared to other procedures, 95% CI 0.19-0.92), and for new-onset TCS preoperative neurological deficit (OR 2.57, 95% CI 1.32-5.01).Seizure worsening is rare but should be discussed when counseling patients. The identified risk factors may assist informed decision-making before surgery.
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| 7. |
- Christensen, Jakob, et al.
(författare)
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Estimates of epilepsy prevalence, psychiatric co-morbidity and cost
- 2023
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Ingår i: Seizure. - : Elsevier. - 1059-1311 .- 1532-2688. ; 107, s. 162-171
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: This study estimated epilepsy prevalence, psychiatric co-morbidity and annual costs associated with epilepsy.Methods: We used Danish national health registers to identify persons diagnosed with epilepsy and psychiatric disorders, and persons using antiseizure medication and persons using drugs for psychiatric disorders. We calculated the prevalence of epilepsy and co-morbid psychiatric disorders in Denmark on December 31, 2016, using information on epilepsy and psychiatric disorders based on combinations of hospital contacts and use of antiseizure and psychoactive medication. Further, direct and indirect annual costs associated with epilepsy were calculated using individual-level data from a range of socioeconomic registers.Results: There were 5,044,367 persons alive and living in Denmark on December 31, 2016, including 33,628 persons with at least one hospital contact with epilepsy in the previous five years (epilepsy prevalence 0.67% (0.69% males; 0.65% females)). Among these persons with epilepsy, we identified 12,562 (37.4%) persons with a psychiatric disorder or use of drugs used for psychiatric disorders as compared with 801,052 (15.9%) persons in the general population. The estimated total annual individual net costs associated with epilepsy was €30,683. Compared with prevalence estimates on December 31, 2006, the prevalence of epilepsy on December 31, 2016, was slightly higher in the older population and slightly lower in childrenConclusions: Population estimates from national registers provide epilepsy prevalence estimates of approximately 0.6–0.7% - similar to previous reviews of epilepsy prevalence. In addition, the national sample allowed idenitfication of high prevalence of psychiatric disorders and high societal costs associated with epielspy.
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| 8. |
- Cross, J. H., et al.
(författare)
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Epilepsy surgery for children and adolescents: evidence-based but underused
- 2022
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Ingår i: Lancet Child & Adolescent Health. - : Elsevier BV. - 2352-4642. ; 6:7, s. 484-494
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Forskningsöversikt (refereegranskat)abstract
- Paediatric epilepsy surgery is an increasingly used evidence-based management option with low risks for complications. Developments in neuroimaging techniques and other advanced diagnostics have widened the spectrum of children who could benefit from the procedure, and surgery is now considered a standard management approach for epilepsy. Available data indicate that early surgery improves outcomes. Despite these considerable advances, epilepsy surgery in children is still underused. In this Review, we summarise the indications, patient selection, principles of presurgical investigations, optimal timing, and types of epilepsy surgery. We also examine comprehensive outcomes after surgery, including seizure outcomes, complications, cognition, neurodevelopment, vocational outcome, and health-related quality of life of children and their parents. Successful epilepsy surgery could lead to improvement in all these areas. Children should, therefore, be referred early for evaluation in an appropriately competent centre.
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| 9. |
- Goselink, Rianne J. M., et al.
(författare)
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Transition to adult care in epilepsy: A systematic review
- 2022
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Ingår i: Seizure. - : Elsevier BV. - 1059-1311 .- 1532-2688. ; 101, s. 52-59
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Tidskriftsartikel (refereegranskat)abstract
- The transfer from paediatric to adult care can be a complex process in children with epilepsy. Inadequate care during this phase can affect long-term medical and psychosocial outcomes. The aim of this study was to review studies on transitional care from paediatric to adult healthcare for young persons with epilepsy in order to synthesize evidence for best practice. We undertook a systematic review following PRISMA guidelines and employed narrative synthesis. A total of 36 articles were included, of which 11 were interventional studies and 25 observational studies. Study quality was rated as 'good' for only four studies. Interventions included joint or multidisciplinary clinics, education (patient and health professional education) and extended service provision (Saturday clinics, peer-groups). All studies observed a positive effect experienced by the participants, regardless of intervention type. Observational studies showed that transition plans/programmes are asked for but frequently not existing or not adapted to subgroups with intellectual disability or other neurodevelopmental conditions. The results of this systematic review on transitional care in epilepsy suggest that a planned transition process likely enhances medical and psychosocial outcomes for young people with epilepsy, but the body of evidence is limited and there are significant gaps in knowledge of what efficacious transition constitutes. More studies are needed employing qualitative and quantitative methods to further explore the needs of young people with epilepsy and their families but also robust study designs to investigate the impact of interventions on medical and psychosocial outcomes.
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| 10. |
- Granthon, Cecilia, 1986, et al.
(författare)
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Reduced long-term mortality after successful resective epilepsy surgery: a population-based study.
- 2024
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Ingår i: Journal of neurology, neurosurgery, and psychiatry. - 0022-3050 .- 1468-330X. ; 95:3, s. 249-255
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Tidskriftsartikel (refereegranskat)abstract
- We investigated all-cause and epilepsy-related mortality in patients operated with resective epilepsy surgery and in non-operated patients with drug-resistant epilepsy. Our hypothesis was that patients who proceed to surgery have lower mortality over time compared with non-operated patients.Data from 1329 adults and children from the Swedish National Epilepsy Surgery Register and 666 patients with drug-resistant epilepsy who had undergone presurgical work-up but not been operated were analysed. The operated patients had follow-ups between 2 and 20 years. We used the Swedish Cause of Death Register to identify deaths. Autopsy reports were collected for patients with suspected sudden unexpected death in epilepsy (SUDEP). Kaplan-Meier and Cox regression analyses were performed to identify predictors for mortality and SUDEP.SUDEP accounted for 30% of all deaths. Surgery was associated with lower all-cause mortality (HR 0.7, 95% CI 0.5 to 0.9), also when adjusted for age, sex and tonic-clonic seizures at inclusion. The benefit of surgery seemed to persist and possibly even increase after 15 years of follow-up. Risk factors of mortality for operated patients were persisting seizures and living alone. Of the operated patients, 37% had seizures, and these had a higher risk of mortality (HR 2.1, 95% CI 1.4 to 3.0) and SUDEP (HR 3.5, 95% CI 1.7 to 7.3) compared with patients with seizure freedom at last follow-up.In this large population-based epilepsy surgery cohort, operated patients had a lower all-cause mortality compared with non-operated patients with drug-resistant epilepsy. Seizure freedom was the most important beneficial factor for both all-cause mortality and SUDEP among operated patients.
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