Inability to start or complete upper secondary school strongly predicts unemployment and psychosocial and psychiatric adversities - A register-based follow-up study from southwestern Sweden.

AIM: To study academic, social and psychiatric outcomes among adults in the general population in southwestern Sweden. Groups of individuals born in 1998 and ineligible, eligible but not completed, and eligible and completed upper secondary school were followed in 2020. METHODS: Data were retrieved from Statistics Sweden, the Swedish National Agency for Education, the Longitudinal Integrated Database for Health Insurance and Labour Market Studies, the Swedish National Crime Register and the National Patient Register. The four adverse outcomes neither engaging in post-secondary studies nor having a regular salary, needing social benefits, having any criminal conviction, and having a psychiatric disorder at age ≥16 were examined. RESULTS: Of the final sample of 2706 individuals who had attended 9th grade of compulsory school in 2014, 273 (10%) were ineligible for upper secondary school. Of eligible individuals, 82 (3%) never started, 282 (10%) did not complete and 2065 (77%) completed upper secondary school. Compared with completers, the odds ratios for adverse outcomes were markedly increased for all other groups up to 22 years old. CONCLUSION: Inability to start or complete upper secondary school strongly predicted unemployment and psychosocial and psychiatric adversities. School authorities should consider offering vocational programmes post compulsory school without grade restrictions.

Psychosocial outcomes of repeated treatment of seizure clusters with midazolam nasal spray: Results of a phase 3, open-label extension trial.

OBJECTIVE: To evaluate treatment satisfaction, level of anxiety, confidence about traveling with midazolam nasal spray (MDZ-NS), and health-related quality of life in patients with seizure clusters and their caregivers after repeated, intermittent use of MDZ-NS in the outpatient setting. METHODS: We analyzed the psychosocial outcome data from a phase 3, open-label extension trial (ARTEMIS-2; P261-402; NCT01529034) in patients 12 years of age and older with seizure clusters on a stable regimen of antiseizure medications. Caregivers administered MDZ-NS 5 mg when patients experienced a seizure cluster. A second dose could be given if seizures did not terminate within 10 min or recurred from 10 min to 6 h. Treatment Satisfaction Questionnaire for Medication (TSQM), the Intranasal Therapy Impact Questionnaire (ITIQ), and the Short Form-12 Health Survey version 2 (SF-12v2) were self-administered by patients and/or caregivers at prespecified visits. RESULTS: Of the one hundred and seventy-five patients enrolled in ARTEMIS-2, 161 (92.0%) received ≥ 1 dose of MDZ-NS and had a post-treatment seizure-related assessment and were included in the Efficacy Evaluable Set in this analysis, with a total of 1,998 treated seizure clusters over a median duration of 16.8 months. All TSQM scales showed improvement from the baseline of the double-blind ARTEMIS-1 trial (NCT01390220) to the last visit in ARTEMIS-2, indicating greater satisfaction with MDZ-NS across all domains, with a mean change from baseline of 8.8, 6.1, 4.3, and 6.2 for effectiveness (n = 135), side effects (n = 139), convenience (n = 139), and global satisfaction (n = 138), respectively. Change from baseline in TSQM scores generally increased with repeated MDZ-NS use. In both patients and caregivers, anxiety generally lessened with repeated MDZ-NS use, with a mean improvement in ITIQ scores in patients' anxiety since receiving MDZ-NS from 2.5 (n = 138) to 3.5 (n = 145) from visit 1 to the last visit (and from 2.6 [n = 156] to 3.6 [n = 160] for caregivers), respectively. From visit 1 (screening and enrollment in ARTEMIS-2) to visit 10 (after 16 seizure cluster episodes treated with MDZ-NS), the proportions of patients and caregivers who answered "strongly agree" or "agree" for confidence about traveling with an intranasal spray remained ≥ 79% and generally increased over repeated MDZ-NS use. Small positive mean changes in SF-12v2 scores from baseline to the last visit were observed in both patients and caregivers, respectively, for the domains of physical functioning (0.9, 1.1), role-physical (2.4, 0.3), bodily pain (1.7, 0.3), general health (0.6, 1.2), and role-emotional (2.1, 0.3), and in the physical health component (1.6, 1.0). CONCLUSION: Patients and caregivers perceived MDZ-NS favorably, with improvement from baseline on perceived effectiveness, side effects, convenience, and global satisfaction in the TSQM. This is supported by progressively lower anxiety and higher confidence levels about traveling with MDZ-NS over repeated intermittent use in the ITIQ. The positive mean changes observed in SF-12v2 scores from baseline to the last visit were small in magnitude. Limitations of this exploratory analysis include the open-label trial design and that these questionnaires have not been directly validated in epilepsy to identify clinically important changes; however, this does not mean these findings are not clinically meaningful. Overall, MDZ-NS is a socially acceptable drug device for outpatient treatment of seizure clusters that has the potential to improve quality of life and overall independence.

The impact of childhood acquired brain injury on siblings: a scoping review.

OBJECTIVE: (a) To analyze the extent and nature of research on the impact of childhood acquired brain injury (ABI) on siblings, (b) to synthetize in a descriptive way the results of these studies and propose perspectives of care/support. METHOD: A literature search of 3 databases was performed up to August 2022. Studies addressing issues around siblings of children with ABI were included in the scoping review. RESULTS: 25 articles were identified and analyzed. Results indicate that there is a paucity of research on this issue. However, interest in the subject has increased over past decades. Despite variable results, the current literature highlights the negative impact of ABI on family functioning and relationships. The trajectory and quality of life of siblings of children with ABI are modified. ABI causes intense and mixed emotions, psychological distress, behavioral difficulties and social stigma. Siblings have varied ways of coping with ABI and express particular needs that must be addressed. CONCLUSION: There is a significant impact of childhood ABI on siblings' subsequent life. Existing studies on this subject are few, heterogeneous, and sometimes contradictory. Further studies on this theme therefore appear necessary in order to propose appropriate support for patients' siblings according to their age and situation.

Results of the prospective multicenter SoLKiD cohort study indicate bio-psycho-social outcome risks to kidney donors 12 months after donation.

The outcome after living kidney donation was assumed to be comparable to that of the general population. However, recent register studies reveal negative changes in kidney function, quality of life and fatigue. Avoiding methodological issues of previous studies, the Safety of the Living Kidney Donor (SoLKiD) cohort study analyzed the outcome of donors in a multicenter and interdisciplinary fashion. Donor data were collected pre-donation and two-, six- and 12-months post-donation in 20 German transplantation centers. Primary parameters were kidney function, quality of life, and fatigue. Secondary endpoints were blood pressure, hemoglobin, hemoglobin A1c, body mass index, depression and somatization. Parameters were analyzed with non-parametric statistical tests and a mixed model regression for changes in time, their clinical relevance and interaction encompassing 336 donors with mean age of 52 years. Most of the physical secondary parameters, depression, and quality of life showed little or no changes and regained their pre-donation level. Kidney function decreased significantly with a 37% loss of glomerular filtration rate and an increase of donors with chronic kidney disease stage 3 from 1.5% pre-donation to about 50%. Donors consistently showed increased fatigue and somatization. Mental fatigue increased from 10.6% to 28.1%. The main influencing factors for decreased kidney function and increased fatigue were their respective pre-donation levels, and donor age for kidney function and subject stress level in fatigue. Thus, our study showed that a significant number of donors developed clinically relevant changes in physical and mental health and emphasizes the urgent need to inform potential donors about these risks.

Quality of Life and Social and Psychological Outcomes in Adulthood Following Allogeneic HSCT in Childhood for Inborn Errors of Immunity.

BACKGROUND: Hematopoietic stem cell transplant (HSCT) is well established as a corrective treatment for many inborn errors of immunity (IEIs) presenting in childhood. Due to improved techniques, more transplants are undertaken and patients are living longer. However, long-term complications can significantly affect future health and quality of life. Previous research has focused on short-term medical outcomes and little is known about health or psychosocial outcomes in adulthood. OBJECTIVE: This project aimed to ascertain the long-term social and psychological outcomes for adults who underwent HSCT for IEI during childhood. METHODS: Adult patients, who had all undergone HSCT for IEI during childhood at two specialist immunology services at least 5 years previously, were invited to participate in the study. Questionnaires and practical tasks assessed their current functioning and circumstances. Information was also gathered from medical notes. Data was compared with population norms and a control group of participant-nominated siblings or friends. RESULTS: Eighty-three patients and 46 matched controls participated in the study. Patients reported significantly better physical health-related quality of life than the general population norm, but significantly worse than matched controls. Patient's self-reported physical health status and the perceived impact of their physical health on everyday life were worse than matched controls and patients reported higher levels of anxiety and lower mood than the general population. For those where their IEI diagnosis was not associated with a learning disability, cognitive function was generally within the normal range. CONCLUSIONS: Patients who have had a HSCT in childhood report mixed psychosocial outcomes in adulthood. More research is needed to establish screening protocols and targeted interventions to maximize holistic outcomes. CLINICAL IMPLICATIONS: Screening for holistic needs and common mental health difficulties should be part of routine follow-up. Information should be provided to patients and families in order to support decision-making regarding progression to transplant and the early identification of any difficulties.

Parents' and children's decision-making and experiences in pediatric epilepsy surgery.

BACKGROUND: In pediatric epilepsy surgery, little research has been conducted on parents' decision-making for or against surgery, their satisfaction with the surgical outcome, as well as their children's personal experiences with the process. OBJECTIVE: This study explores (1) factors that may influence parents' decision-making, (2) factors associated with their postoperative satisfaction, and (3) their children's involvement in decision-making and their experiences with epilepsy surgery. METHODS: Self-developed questionnaires were provided to parents and their children in Germany, Switzerland, and Austria. Clinical and psychosocial differences between parents who decided for or against surgery, as well as associations between postoperative factors and the parents' satisfaction were statistically analyzed. RESULTS: Fifty-one questionnaires (42 parent and nine patient questionnaires) were evaluated. Parents who decided for epilepsy surgery reported significantly more frequently to have received a good medical consultation and a consistent recommendation. They made significantly less use of information websites, internet forums, and patient organizations. Their children were classified as more intelligent and resisted surgery less. Most of the parents were satisfied with the surgical outcome (83%). Parents were significantly more satisfied when their children had fewer medication side effects, their memory or concentration had improved, their character or behavior had changed in a positive direction, or when their children were more independent or less excluded. They were also significantly more content when they had more free time to themselves and their professional situation or their relationship with their children, friends, or other family members had improved. However, no significant association was found between parental satisfaction and reduced number of medications or improved seizure outcome. Although the children were reported to have been minimally involved in the decision-making process, they were satisfied with their involvement. CONCLUSIONS: A good medical consultation that involves the children and considers the family's living conditions is a crucial factor for parents' decision-making on pediatric epilepsy surgery. For parents' satisfaction, a positive change in their child's character or behavior and an improved psychosocial situation of the family are more important than postoperative seizure frequency or number of antiepileptic drugs (AEDs). Therefore, the medical consultation should not only focus on clinical factors, but also point out psychosocial and behavioral changes that may occur after the surgical treatment.

Health-related quality of life, emotional burden, and neurocognitive function in the first generation of metastatic melanoma survivors treated with pembrolizumab: a longitudinal pilot study.

PURPOSE: The aim of this study was to assess the evolution of health-related quality of Life (HRQoL), emotional burden, and neurocognitive function in the first-generation metastatic melanoma survivors treated with pembrolizumab. METHODS: Survivors were defined as patients who achieved a durable remission for at least 6 months after initiating pembrolizumab in a single-center observational study (N = 141). A semi-structured interview was performed at baseline. Neurocognitive computerized testing and patient-reported outcomes were collected at 4 time points to assess HRQoL using the EORTC QLQ-C30 and the HADS to assess anxiety and depression. RESULTS: Out of 35 eligible patients, 25 were recruited and completed baseline assessment (18 female; median age 58 years [range 28-86]; 24 completed the 1-year follow-up phase. Median time since diagnosis was 30 months (range 12-84); median time since initiation of pembrolizumab was 19 months (range 6-42). At all visits, survivors reported a significantly lower global HRQoL, lower physical, emotional, cognitive, role, and social functioning compared with the European Mean of the healthy population. Fifteen patients (64%) had clinical levels of anxiety/depression at one time point during follow-up. The clinical interview revealed that 12 patients (48%) suffered from Cancer-Related-Post-Traumatic-Stress disorder, of whom 7 (28%) developed transient suicidal ideation, 1 patient made a suicide attempt. Neurocognitive testing revealed cognitive impairment in 8 patients (32%). CONCLUSIONS: Metastatic melanoma survivors, treated successfully with pembrolizumab, are at risk for suffering from emotional distress and neurocognitive impairment with a persistent impact on their HRQOL. Timely detection in order to offer tailored care is indicated.

Cancer across the ages: a narrative review of caregiver burden for patients of all ages.

PROBLEM IDENTIFICATION: Approximately 2.8 million Americans care for an individual with cancer. Because the literature typically describes caregiving experiences within patient age-groups (e.g., pediatrics, geriatrics), the purpose of this narrative review was to describe common and unique burdens and distress among caregivers of cancer-patients of different ages. LITERATURE SEARCH: We identified representative peer-reviewed manuscripts related to caregivers of pediatric, adolescent, young-, middle-, and late-adult oncology patients. We combined search terms "caregiver" and "cancer" with "burden," "distress," and/or age-related terms ("pediatric" or "geriatric"). Included studies focused on factors of caregiver-burden and distress. DATA EVALUATION/SYNTHESIS: Universal cancer-caregiving experiences include negative impacts on work-productivity, finances, social-/family-dynamics, and physical/emotional health. Age-related life experiences shape outcomes; pediatric caregivers may have fewer financial resources, whereas concurrent comorbidities create challenges for geriatric caregivers. CONCLUSIONS: Caregiving for cancer patients has universal, shared, and patient age-specific burdens. IMPLICATIONS FOR PRACTICE: Supportive care based on patient-age may improve caregiver well-being.

Donors' health-related quality-of-life and psychosocial outcomes 3 years after uterus donation for transplantation.

STUDY QUESTION: What are the effects on donors' health-related quality-of-life, mood and marital relationship 2 and 3 years after uterus donation for transplantation? SUMMARY ANSWER: Overall, uterus donors were relatively stable regarding health-related quality-of-life, mood and marital relationship after donation, although slight negative deviations existed in a few participants, presumably associated with older age or with continued non-pregnancy outcomes from the donation. WHAT IS KNOWN ALREADY: Uterus transplantation has recently proved to be a successful treatment for absolute uterine factor infertility. However, there is no previous research on health-related quality-of-life and long-term psychosocial outcomes of donors. The present cohort of nine donors represents the cases of the first clinical uterus transplantation study, which took place in Sweden. Long-term follow-up studies of health-related quality-of-life in other living donors, such as of kidneys and livers, suggest that donors have above average quality-of-life prior to donation and that this typically continues during the years after donation. In our previous 1-year report on psychosocial and quality-of-life outcomes, we found that two out of nine donors showed decreased health-related quality-of-life at 6 and 12 months post donation. STUDY DESIGN, SIZE, DURATION: This complete, prospective cohort study included the nine donors of the first uterus transplantation trial, which took place in Sweden in 2013. Donors were assessed by questionnaires 2 and 3 years after surgery for uterus donation. PARTICIPANTS/MATERIALS, SETTING, METHODS: The nine donors (aged 39 to 62 years) were all a close relative or friend of their recipient. Physical and mental component summaries of health-related quality-of-life were measured with the SF-36 questionnaire. Mood was assessed by the Hospital Anxiety Depression Scale. Relationship with partner was measured with the Dyadic Adjustment Scale. MAIN RESULTS AND THE ROLE OF CHANCE: The physical and mental components of the SF-36 were generally above the mean scores for a normative population. At Year 3, the two oldest donors (above 60 years of age at surgery) showed clear negative deviations in the physical component. The mental component summary of SF-36 was essentially unaltered overall at Year 2, but slight negative deviations were seen in three donors at Year 3. These three donors were among the four with unsuccessful pregnancy outcomes for the recipients following donation. Scores of anxiety and depression (mood) were within normative values for all donors at Year 2, but one donor presented with increased (worse) values for both variables at Year 3. Two donors showed signs of relationship distress during the follow-up period and another had divorced during this period. LIMITATIONS, REASONS FOR CAUTION: The small sample size is a limitation. WIDER IMPLICATIONS OF THE FINDINGS: The present study suggests that live uterus donation does not in general negatively influence health-related quality-of-life, mood and relationship in a 2 to 3-year perspective follow-up. Longer follow-up studies, including larger number of donors and in different cultural settings, are needed. STUDY FUNDING/COMPETING INTEREST(S): The Jane and Dan Olsson Foundation for Science; the Wallenberg Foundation; an ALF grant from the Swedish state under an agreement between the government and the county councils; the Swedish Research Council; a Ferring Pharmaceuticals scholarship in memory of Robert Edwards; and the Iris Jonzén-Sandbloms and Greta Jonzéns Foundation. The authors have no competing interests. TRIAL REGISTRATION NUMBER: NCT01844362.

Depression, quality of life, activities of daily living, and subjective memory after deep brain stimulation in Parkinson disease-A reliable change index analysis.

OBJECTIVES: In the field of Parkinson disease (PD) research, many studies have shown that deep brain stimulation (DBS) can soften side effects, which arise during long-term medical therapy. This study focuses on the changes in depressive symptoms, quality of life (with the subdivisions physical and mental health), activities of daily living, and subjective memory functioning in PD patients testing the baseline and the outcome 1 year after DBS. METHODS: For the first time, the reliable change index (RCI) methodology was applied to compare PD-DBS patients (n = 22) with best medically treated PD patients (PD-BMT; n = 28), subjects with mild cognitive impairment (MCI, n = 43) and healthy controls (n = 25) in the above-mentioned domains. The used questionnaires included the revised Beck Depression Inventory (BDI-II), the Short Form (36) Health Survey (SF-36), the Bayer Activities of Daily Living Scale (B-ADL), and the Forgetfulness Assessment Inventory (FAI). RESULTS: The reliable change indices show high constant or improved results of the PD-DBS patients in the domains subjective memory (85.7%-100.0%), activities of daily living (60.0%-90.0%), physical health summary (77.8%), depressive symptoms (61.9%), and mental health summary (50.0%) in comparison with the PD-BMT, MCI, and control group. CONCLUSIONS: DBS is an established alternative to best medical treatment of PD. The comparisons between the PD-DBS and PD-BMT groups do suggest that the domains mental health, depressive symptoms, and physical health benefit most, while the domains activities of daily living and subjective memory functioning are rather constant. Nevertheless, further research is needed to identify mechanisms and predictors that lead to improvement in individual cases.

Heterogeneity of functional outcomes in patients with bipolar disorder: a cluster-analytic approach.

OBJECTIVE: The aim was to examine the heterogeneity of psychosocial outcomes in euthymic bipolar disorder (BD) patients and analyse the potential influence of distinct variables on functioning. METHOD: Using a hierarchical cluster exploratory analysis, 143 euthymic patients with diagnosis of BD were grouped according to their functional performance based on domains scores of the Functioning Assessment Short Test (FAST). The resulting groups were compared on sociodemographic, clinical and neurocognitive variables to find factors associated with each functional cluster. RESULTS: Patients were grouped in three functional profiles: patients with good functioning in all the FAST areas, patients with an intermediate profile showing great difficulties in the occupational domain and milder difficulties in most of the rest domains, and a third group with serious difficulties in almost all functional areas. Both functionally impaired groups were characterized by higher subthreshold symptoms (depressive and manic) and higher unemployment rates. The most functionally impaired group also showed lower scores on some measures of processing speed. CONCLUSION: Two of three functional profiles showed some kind of impairment which was associated with subsyndromal symptoms and cognitive performance. These patterns should be taken into consideration to develop more individualized interventions to restore, or improve, psychosocial outcomes.

Psychosocial outcome in epilepsy after extratemporal surgery.

OBJECTIVE: Only limited data exist on psychosocial long-term outcome after epilepsy surgery in patients with extratemporal epilepsy. The aim of this study was to investigate psychosocial outcome after extratemporal epilepsy surgery and to assess factors predicting favorable outcome. METHOD: Sixty-five out of 104 eligible patients who had undergone extratemporal epilepsy surgery at our epilepsy center between 1990 and 2015 (mean age: 42.2. years; 75% of the resections in the frontal lobe) completed a questionnaire asking about seizure status, employment status, marital and living situation, driving status, depressive symptoms, and quality of life (QOL). Follow-up was on average 9.2years after surgery (range: 1-26years). RESULTS: Thirty-eight (58%) patients were free of disabling seizures (Engel class I), and 28 (43%) have not experienced any seizures after surgery (Engel class IA). Employment rate in the primary labor market remained at 45%, but more patients lost employment (14%) than gained employment (8%). Postoperative employment was predicted by preoperative employment (p=.007), seizure freedom (p=.025), older age at seizure onset (p=.018), younger age at follow-up (p=.035), and female gender (p=.048). Seizure-free patients were more likely to be driving; have a partner, particularly in males; and have lower depressive scores. Quality of life at follow-up was best predicted by employment (p=.012), partnership (p=.025), and seizure freedom (p=.025). In contrast, recurrence of seizures and early seizure onset were associated with poor psychosocial outcome, particularly in men. CONCLUSION: The study provides support that extratemporal surgery can lead to improved QOL and favorable psychosocial outcome. Seizure freedom is important but not the only determinant of good psychosocial outcome.

Long-term outcome in adolescent-onset generalized genetic epilepsies.

OBJECTIVE: Until now, it has been unclear if the three subsyndromes of adolescent-onset generalized genetic epilepsy (GGE) differ in long-term prognosis. Therefore, this study aimed to compare long-term seizure outcome in juvenile absence epilepsy (JAE), juvenile myoclonic epilepsy (JME), and epilepsy with generalized tonic-clonic seizures alone (EGTCS). METHODS: This retrospective study is based on the archive of an institutional tertiary care outpatient clinic for adult patients with epilepsy. Charts of 870 epilepsy outpatients were reviewed among whom 176 had adolescent-onset GGE (53 JAE, 66 JME, 57 EGTCS). Median patient age at investigation was 60 years; median follow-up time was 42.5 years. If possible, GGE patients were additionally interviewed on psychosocial and clinical variables. RESULTS: Age at first seizure was significantly higher in EGTCS patients (median 18 years) than in patients with JAE or JME (14 years each; p ≤ 0.001). Long-term seizure outcome hardly differed between the three subsyndromes. At the end of follow-up, 60% of all patients were in 5-year terminal seizure remission, and in 14%, epilepsy even had resolved (>10 years without seizures, >5 years without pharmacotherapy). Twenty percent of patients had persistent seizures during the last year of follow-up. Across all patients, 23% reported a psychiatric comorbidity, 87% had married, and 57% had achieved university entrance qualification. SIGNIFICANCE: Long-term outcome was shown to be highly similar across all subsyndromes of adolescent-onset GGE. Even in a selection of difficult-to-treat epilepsy patients still attending an adult epilepsy clinic, most become seizure-free. To confirm these findings, prospective studies are needed.

Long-term metabolic follow-up and clinical outcome of 35 patients with maple syrup urine disease.

BACKGROUND: Maple syrup urine disease (MSUD) is a rare disease that requires a protein-restricted diet for successful management. Little is known, however, about the psychosocial outcome of MSUD patients. This study investigates the relationship between metabolic and clinical parameters and psychosocial outcomes in a cohort of patients with neonatal-onset MSUD. METHODS: Data on academic achievement, psychological care, family involvement, and biochemical parameters were collected from the medical records of neonatal MSUD patients treated at Necker Hospital (Paris) between 1964 and 2013. RESULTS: Thirty-five MSUD patients with a mean age of 16.3 (2.1-49.0) years participated. Metabolic decompensations (plasma leucine >380 µmol/L) were more frequent during the first year of life and after 15 years, mainly due to infection and dietary noncompliance, respectively. Leucine levels increased significantly in adulthood: 61.5% of adults were independent and achieved adequate social and professional integration; 56% needed occasional or sustained psychological or psychiatric care (8/19, with externalizing, mood, emotional, and anxiety disorders being the most common). Patients needing psychiatric care were significantly older [mean and standard deviation (SD) 22.6 (7.7) years] than patients needing only psychological follow-up [mean (SD) 14.3 (8.9) years]. Patients with psychological follow-up experienced the highest lifetime number of decompensations; 45% of families had difficulty coping with the chronic disease. Parental involvement was negatively associated with the number of lifetime decompensations. CONCLUSION: Adults had increased levels of plasma leucine, consistent with greater chronic toxicity. Psychological care was associated with age and number of decompensations. In addition, parental involvement appeared to be crucial in the management of MSUD patients.

Glioneuronal tumors in childhood - Before and after surgery. A long-term follow-up study.

AIM: To give a detailed description of the long-term outcome of a cohort of children with glioneuronal tumors regarding pre- and postsurgical factors, including "dual" and "double" pathology, seizure freedom, and psychosocial outcome. METHODS: During a fifteen-year period (1995-2009), all patients (age 0-17.99years) with a glioneuronal brain tumor diagnosed and treated at Uppsala University Children's Hospital were identified from the National Brain Tumor Registry and the National Epilepsy Surgery Registry. Hospital medical records were reviewed and neuroradiological and neuropathological findings were re-evaluated. A cross-sectional long-term follow-up prospective evaluation, including an interview, neurologic examination, and electroencephalogram, was accomplished in patients accepting participants in the study. RESULTS: A total of 25 out of 28 (89%) eligible patients were included. The M:F ratio was 1.5:1. Mean follow-up time after surgery was 12.1years (range 5.0-19.3). Twenty patients were adults (>18years) at follow-up. Seizure freedom was achieved in 64%. Gross total resection (GTR) was the only preoperative factor significantly correlating to seizure freedom (p=0.027). Thirty-eight percent were at some time postoperatively admitted for a psychiatric evaluation. There was a trend towards both higher educational level and employment status in adults who became seizure free. CONCLUSION: Long-term outcome is good regarding seizure freedom if GTR can be achieved, but late seizure recurrence can occur. "Dual" and "double" pathology is uncommon and does not influence seizure outcome. Obtaining seizure freedom seems to be important for psychosocial outcome, but there is a risk for psychiatric comorbidities and long-term follow-up by a multi-professional team is advisable.

Predicting the psychosocial outcome of epilepsy surgery: A longitudinal perspective on the 'burden of normality'.

Good seizure outcomes and good psychosocial outcomes following epilepsy surgery do not necessarily follow one from the other. This study explored the relationship between several presurgical psychosocial characteristics and postsurgical quality-of-life outcomes. The study aimed to develop the concept of 'the burden of normality' and identify risk factors for a poor psychosocial outcome that could be targeted with ameliorative presurgery cognitive behavioral techniques. Data were collected from 77 epilepsy surgery patients from three UK epilepsy centers and presurgery and postsurgery follow-up data were obtained from 30-34 patients, depending on the measure. Measures were self-report. Postsurgery intervals were determined by the epilepsy surgery care pathway at individual centers. Presurgery poor levels of mental health, poor social functioning, increased belief in illness chronicity, and associating epilepsy with social role limitations were all associated with poor postsurgical quality of life. Adopting an accepting coping strategy presurgery was associated with good postoperative quality of life. Regression analysis showed that a good postsurgical quality of life was positively predicted by a presurgical coping style of being able to make the best of a situation and see challenges in a positive light (i.e., positive reinterpretation and growth from the COPE scale) and negatively predicted by presurgical levels of anxiety. These data are presented as an important step in identifying psychological red flags for an adverse psychosocial outcome to epilepsy surgery, as exemplified by the concept of the 'burden of normality' and specifying targets for preoperative ameliorative psychological advice.

Transition to adult medical care for adolescents with epilepsy.

INTRODUCTION: During transition to adult medical care, the adolescent with epilepsy is especially prone to emotional, mental, physical, and social developmental difficulties, leading to stigma and poor psychosocial and socioeconomic outcome in the long term. OBJECTIVES: The aim of this review is twofold: to describe the psychosocial and medical transition from adolescence to adulthood and to evaluate the most effective model for transitional services in adolescents with epilepsy. METHODS: We searched PubMed for quantitative and qualitative data about transition from adolescence to adulthood in patients with epilepsy. RESULTS: A total of 49 articles were retrieved. We reviewed personal, psychosocial, and medical issues during transition and their long-term individual and societal consequences. Identifying risk factors for poor transition can lead to appropriate interventions for patients and their family. Although the concept of multidisciplinary transition care for adolescents with epilepsy is widely recognized, only a few transition clinics have been established. There is lack of evidence for their quality and cost-effectiveness. CONCLUSION: In addition to medical problems, more attention should be paid to the risk of psychosocial problems during transition from pediatric to adult care. The implementation of transition care for adolescents with epilepsy is considered beneficial; however, its effectiveness should be further investigated.

Inverse relationship between stigma and quality of life in India: is epilepsy a disabling neurological condition?

OBJECTIVE: Stigma associated with epilepsy has negative effects on psychosocial outcomes, affecting quality of life (QOL) and increasing disease burden in persons with epilepsy (PWEs). The aim of our study was to measure the impact of stigma on the QOL of PWEs and the prevalence of neurological disability due to stigmatized epilepsy. METHOD: A prospective observational study with a sample of 208 PWEs was conducted. Neuropsychological Tests used were the Indian Disability Evaluation Assessment Scale (IDEAS) to measure disability, the Dysfunctional Analysis Questionnaire (DAQ) to measure QOL, and the Stigma Scale for Epilepsy (SSE) to assess stigma. RESULTS: Spearman correlation was calculated, and stigma (SSE) was highly significant with QOL (DAQ) (0.019) and disability due to stigmatized epilepsy (IDEAS) (0.011). CONCLUSION: The present study supports the global perception of stigma associated with epilepsy and its negative impact on their overall QOL and its contribution to the escalation of the disease burden.

Common experiences of patients following suboptimal treatment outcomes: implications for epilepsy surgery.

Few studies have investigated the patient experience of unsuccessful medical interventions, particularly in the epilepsy surgery field. The present review aimed to gain insight into the patient experience of seizure recurrence after epilepsy surgery by examining the broader literature dealing with suboptimal results after medical interventions (including epilepsy surgery). To capture the patient experience, the literature search focused on qualitative research of patients who had undergone medically unsuccessful interventions, published in English in scholarly journals. Twenty-two studies were found of patients experiencing a range of suboptimal outcomes, including seizure recurrence, cancer recurrence and progression, unsuccessful joint replacement, unsuccessful infertility treatment, organ transplant rejection, coronary bypass graft surgery, and unsuccessful weight-loss surgery. In order of frequency, the most common patient experiences included the following: altered social dynamics and stigma, unmet expectations, negative emotions, use of coping strategies, hope and optimism, perceived failure of the treating team, psychiatric symptoms, and control issues. There is support in the epilepsy surgery literature that unmet expectations and psychiatric symptoms are key issues for patients with seizure recurrence, while other common patient experiences have been implied but not systematically examined. Several epilepsy surgery specific factors influence patient perceptions of seizure recurrence, including the nature of postoperative seizures, the presence of postoperative complications, and the need for increased postoperative medications. Knowledge of common patient experiences can assist in the delivery of patient follow-up and rehabilitation services tailored to differing outcomes after epilepsy surgery.

Evaluation of Telehealth in Child Behavioral Health Services Delivery During the COVID-19 Pandemic.

OBJECTIVE: The authors quantified the impact of the use of telehealth services on patient-level clinical outcomes among children with complex behavioral and emotional needs in Idaho during the COVID-19 pandemic by comparing data collected in 2020 with data for the same months in 2019. METHODS: Longitudinal statewide data of Child and Adolescent Needs and Strengths (CANS) assessments were extracted from Idaho's mental and behavioral health system. Prepandemic assessments were matched to midpandemic assessments. A linear mixed-effect model was used to explore four child-level outcomes: psychosocial strengths-building rate, rate of need resolution within a life-functioning domain, rate of need resolution within a behavior-emotional domain, and rate of need resolution within a high-risk behaviors domain. RESULTS: The number of new patients admitted to Idaho's state-funded mental and behavioral health program decreased almost twofold from April-December 2019 to April-December 2020 (N=4,458 vs. 2,794). For most children with complex needs, the use of telehealth was as effective in terms of strengths building and needs resolution as in-person services; for children whose caregivers had issues with access to transportation, availability of telehealth services improved outcomes for the children. CONCLUSIONS: The COVID-19 pandemic in 2020 was associated with a dramatic drop in the number of children served by Idaho's mental health program. Telehealth may effectively bridge mental health service delivery while patients and providers work toward the resolution of transportation issues or may serve as a more acceptable permanent format of service delivery for some populations.