Supporting Attention in Children with Epilepsy (SPACE): Pilot of a psychoeducational intervention.

PURPOSE: Children with epilepsy are at high risk for impairing symptoms of attention deficit hyperactivity disorder (ADHD), especially difficulties with attention. There is limited evidence regarding the use of psychological interventions for children with epilepsy and attention difficulties. We developed and piloted a novel psychoeducational intervention -Supporting Attention in Children with Epilepsy (SPACE). METHODS: Eligible children with epilepsy (8-13 years) and difficulties with attention underwent a comprehensive psychological assessment and took part in a single-arm trial of the SPACE intervention. The first three sessions of SPACE took place in groups of 3-5 children and two psychologists. The final three sessions involved one psychologist meeting the child and parent(s). The child's teacher joined for one of the final three sessions. The first group of participants participated in the intervention in person. Subsequent groups took part online due to COVID-19-related restrictions. Measures of ADHD -inattention symptoms (parent and teacher), executive functioning (child, parent, and teacher), and epilepsy-specific and general Health-Related Quality of Life (HRQOL) (child and parent) were administered before and three months after completing the intervention. RESULTS: Twenty-seven children with epilepsy expressed an interest in participating. Sixteen children met eligibility criteria and participated in a single-arm pilot of the intervention. All 16 participants completed the intervention. Pre- and post-intervention data were available for 15 of the 16 children. Improvement in function was noted on all measures and reached statistical significance for child ratings of executive functioning (p = 0.030) and HRQOL (p = 0.043), and parent-rated child HRQOL (p < 0.001). Qualitative feedback regarding content and acceptability was positive. CONCLUSION: A psychoeducational intervention for children with epilepsy and difficulties with attention can lead to improved executive functioning and HRQOL. Such an intervention may be a useful first-line intervention for children with epilepsy at risk for or diagnosed with ADHD and/or be used in combination with pharmacological treatment with children with epilepsy and ADHD. However, more robustly designed studies are needed.

Method considerations and study protocol for a Nordic multi-centre prospective study on outcomes in rare paediatric epilepsy surgery subgroups.

Epilepsy surgery is a therapeutic option for selected children with drug-resistant epilepsy. Children who are surgical candidates have a high prevalence of neurodevelopmental comorbidities. There is a lack of adequately sized prospective studies in a number of rare surgical subgroups, especially of outcome domains such as cognitive level and health-related quality-of-life. In this article, we describe method considerations and a study protocol for a Nordic population-based multi-centre follow-up programme covering seizure as well as non-seizure outcomes in children aged <4 years undergoing resective epilepsy surgery and children aged ≤18 years undergoing hemispherotomy, callosotomy or surgery for hypothalamic hamartoma.

Item selection, scaling and construct validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) measurement tool in adults.

PURPOSE: To select and scale items for the seven domains of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) and assess its construct validity. METHODS: Using an online survey, data on 100 potential items, and other variables for assessing construct validity, were collected from 1055 adults with one or more chronic health conditions. Based on a validated conceptual model, confirmatory factor analysis (CFA) and item response models (IRT) were used to select and scale potential items and assess the internal consistency and structural validity of the PRISM-CC. To further assess construct validity, hypothesis testing of known relationships was conducted using structural equation models. RESULTS: Of 100 potential items, 36 (4-8 per domain) were selected, providing excellent fit to our hypothesized correlated factors model and demonstrating internal consistency and structural validity of the PRISM-CC. Hypothesized associations between PRISM-CC domains and other measures and variables were confirmed, providing further evidence of construct validity. CONCLUSION: The PRISM-CC overcomes limitations of assessment tools currently available to measure patient self-management of chronic health conditions. This study provides strong evidence for the internal consistency and construct validity of the PRISM-CC as an instrument to assess patient-reported difficulty in self-managing different aspects of daily life with one or more chronic conditions. Further research is needed to assess its measurement equivalence across patient attributes, ability to measure clinically important change, and utility to inform self-management support.

Pain and functional outcomes in adult survivors of childhood cancer: A report from the St. Jude Lifetime Cohort study.

BACKGROUND: Although survivors of childhood cancer are at risk of chronic pain, the impact of pain on daily functioning is not well understood. METHODS: A total of 2836 survivors (mean age, 32.2 years [SD, 8.5 years]; mean time since diagnosis, 23.7 years [SD, 8.2 years]) and 343 noncancer community controls (mean age, 35.5 years [SD, 10.2 years]) underwent comprehensive medical, neurocognitive, and physical performance assessments, and completed measures of pain, health-related quality of life (HRQOL), and social functioning. Multinomial logistic regression models, using odds ratios and 95% confidence intervals (95% CIs), examined associations between diagnosis, treatment exposures, chronic health conditions, and pain. Relative risks (RRs) between pain and neurocognition, physical performance, social functioning, and HRQOL were examined using modified Poisson regression. RESULTS: Approximately 18% of survivors (95% CI, 16.1%-18.9%) versus 8% of controls (95% CI, 5.0%-10.9%) reported moderate to very severe pain with moderate to extreme daily interference (P < .001). Severe and life-threatening chronic health conditions were associated with an increased likelihood of pain with interference (odds ratio, 2.03; 95% CI, 1.62-2.54). Pain with daily interference was found to be associated with an increased risk of impaired neurocognition (attention: RR, 1.88 [95% CI, 1.46-2.41]; and memory: RR, 1.65 [95% CI, 1.25-2.17]), physical functioning (aerobic capacity: RR, 2.29 [95% CI, 1.84-2.84]; and mobility: RR, 1.71 [95% CI, 1.42-2.06]), social functioning (inability to hold a job and/or attend school: RR, 4.46 [95% CI, 3.45-5.76]; and assistance with routine and/or personal care needs: RR, 5.64 [95% CI, 3.92-8.10]), and HRQOL (physical: RR, 6.34 [95% CI, 5.04-7.98]; and emotional: RR, 2.83 [95% CI, 2.28-3.50]). CONCLUSIONS: Survivors of childhood cancer are at risk of pain and associated functional impairments. Survivors should be screened routinely for pain and interventions targeting pain interference are needed.

Cognitive Fatigue and Processing Speed in Children Treated for Brain Tumours.

OBJECTIVE: The relationship between fatigue and cognition has not been fully elucidated in children and adolescent survivors of brain tumours. The aim of the present study was to investigate the potential relationship between fatigue and cognitive impairments in these survivors, as this group is at risk for both types of deficits. METHODS: Survivors of paediatric brain tumours (n = 45) underwent a neuropsychological testing on average 4 years after diagnosis. Mean age at follow-up was 13.41 years. Cognition was assessed with neuropsychological tests, and fatigue with the Pediatric Quality of Life (PedsQL™) Multidimensional Fatigue Scale. Regression analysis, adjusted for cranial radiotherapy and age at diagnosis, was used to investigate the associations between cognitive variables and fatigue subscales. Cognitive variables associated with fatigue were subsequently exploratively assessed. RESULTS: Significant associations were found for cognitive fatigue and measures of cognitive processing speed; Coding: p = .003, r = .583, 95% CI [9.61; 22.83] and Symbol Search: p = .001, r = .585, 95% CI [10.54; 24.87]. Slower processing speed was associated with poorer results for cognitive fatigue. Survivors with the largest decrease in processing speed from baseline to follow-up also experienced the most cognitive fatigue. Survivors expressed more cognitive fatigue compared to other types of fatigue. CONCLUSIONS: The association between cognitive fatigue and cognitive processing speed in children and adolescents treated for brain tumours is in concordance with the results previously reported in adults. Some survivors experience fatigue without impairment in processing speed, indicating the need for comprehensive assessments. Moreover, the study supports that fatigue is a multidimensional concept which should be measured accordingly.

Neurocognitive and psychosocial outcomes in adult survivors of childhood soft-tissue sarcoma: A report from the St. Jude Lifetime Cohort.

BACKGROUND: To the authors' knowledge, few studies to date have examined long-term neurocognitive outcomes in survivors of childhood soft-tissue sarcoma. METHODS: A total of 150 survivors (41% of whom were female with a mean current age of 33 years [SD, 8.9 years] and a time since diagnosis of 24 years [SD, 8.7 years]) and 349 community controls (56% of whom were female with a mean current age of 35 years [SD, 10.2 years]) completed comprehensive neuropsychological testing, echocardiography, electrocardiography, pulmonary function tests, endocrine evaluation, and physical examination. Patient-reported outcomes of health-related quality of life (HRQOL) and social attainment were collected. Survivors were compared with norms and controls on neurocognitive outcomes using general linear models, and on HRQOL and social attainment using modified Poisson models. The impacts of treatment and chronic health conditions on outcomes were examined using multivariable general linear models (effect size was expressed as unstandardized ß estimates that reflected the unit of change from a mean of 0 and an SD of 1) and modified Poisson models (effect size expressed as relative risks). RESULTS: Compared with controls and population norms, survivors demonstrated lower performance on measures of verbal reasoning (mean z score, -0.45 [SD, 1.15]; P < .001) mathematics (mean z score, -0.63 [SD, 1.07]; P < .001), and long-term memory (mean z score, -0.37 [SD, 1.14]; P < .001). Cumulative anthracycline exposure (per 100 mg/m2 ) was found to be associated with poorer verbal reasoning (ß = -0.14 z scores; P = .04), reading (ß = -0.09 z score; P = .04), and patient-reported vitality (relative risk, 1.32; 95% CI, 1.09-1.59). Neurologic and neurosensory chronic conditions were associated with poorer mathematics (neurologic conditions: ß = -0.63 z score [P = 0.02]; and hearing impairment: ß = -0.75 z scores [P < 0.01]). Better cognitive performance was associated with higher social attainment. CONCLUSIONS: Long-term survivors of soft-tissue sarcoma are at risk of neurocognitive problems and poor HRQOL associated with anthracycline treatment and chronic health conditions.

Microbial invasion of the amniotic cavity is associated with impaired cognitive and motor function at school age in preterm children.

BACKGROUND: Chorioamnionitis is an important cause of preterm delivery. Data on neurodevelopmental outcome in exposed infants are inconsistent due to difficulties in diagnosing intrauterine infection/inflammation and lack of detailed long-term follow-up. We investigate cognitive and motor function in preterm infants at early school age and relate the findings to bacteria in amniotic fluid obtained by amniocentesis (microbial invasion of the amniotic cavity (MIAC)) or placenta findings of histological chorioamnionitis (HCA) or fetal inflammatory response syndrome (FIRS). METHOD: Sixty-six infants with gestational age <34 weeks at birth and without major disabilities were assessed using WISC-III and the Bruininks-Oseretsky Test of Motor Proficiency. Results were corrected for gestational age and sex. RESULTS: Children exposed to MIAC had significantly lower scores for full-scale IQ and verbal IQ compared to the non-MIAC group and the difference in full-scale IQ remained after correction for confounding factors. The MIAC group had also significantly lower motor scores after correction. In contrast, motor function was not affected in infants exposed to HCA or FIRS and differences between groups for cognitive scores were lost after corrections. CONCLUSION: Exposure to bacteria in amniotic fluid is associated with lower motor and cognitive scores in school age preterm infants without major disabilities.

'In the best case seizure-free' - Parental hopes and worries before and satisfaction after their child's epilepsy surgery.

OBJECTIVE: The objective of this study was to gain a better understanding of parental hopes and worries before and subsequent experiences two years after their child had undergone epilepsy surgery. METHODS: The parents of 107 children and young people who underwent epilepsy surgery at a single center completed surveys focusing on hopes and concerns before surgery and subsequent experiences at two-year follow-up. Responses were analyzed by thematic analysis. RESULTS: Before surgery, parental hopes focus on not only seizure freedom or reduction but also potential improvements in child development and emotional-behavioral functioning. Worries before surgery include not only potential injury or loss of skills but also a concern that the surgical procedure would not lead to an improvement in the child's seizures. The vast majority of parents experienced positive aspects at the two-year follow-up including seizure freedom or reduction but also perceived improvements in behavior, development, and sleep. This suggests that for many, expectations for the surgery were met. A small number of parents reported negative effects of surgery including loss of skills, worsening/lack of improvement in seizure frequency, or negative impact on development. SIGNIFICANCE: For the majority of parents whose children undergo surgery, expectations are met, and fears are not realized. Knowledge of parental hopes and worries before surgery as well as experiences after the operation is useful for improving pre- and postsurgical counseling.

Cognitive functioning in a representative cohort of preschool children with febrile seizures.

AIM: To analyse cognitive functioning in 4-5-year-old children who had experienced febrile seizures (FS) and to assess the importance of complex, recurrent and early vs late onset FS. METHODS: The sample consisted of 73 children, screen positive for FS, drawn from the general child population of 4-year-old children attending their health check-up at child healthcare centres in Gothenburg, Sweden. They were assessed as regards general cognitive ability, visual memory and attention and were contrasted with age norms and with results obtained in 20 children without FS from the same healthcare centres. RESULTS: Of the 73 children, two had a previously diagnosed intellectual disability (ID) (one mild, one moderate) and two further children tested within the study had results corresponding to mild ID. Children with early onset of FS (before age 12 months)-who often had recurrent FS-had lower full-scale, verbal and processing speed IQ than those who had later onset of FS. CONCLUSION: Children with early onset of FS and particularly those with recurrent FS may be at increased risk for poorer verbal and processing speed functioning and therefore at risk of developing cognitive, executive dysfunctions. They would probably benefit from neuropaediatric and neuropsychological follow-up.

Parent-reported symptoms of ADHD in young people with epilepsy before and two years after epilepsy surgery.

The aim was to compare parent-reported symptoms of attention-deficit/hyperactivity disorder (ADHD) before (baseline) and two years after pediatric epilepsy surgery (follow-up). The parents of 107 children who underwent epilepsy surgery completed surveys including the Conners 10-item scale at baseline and follow-up. Changes in scores between baseline and follow-up were compared using paired sample t-test. Factors associated with changes in scores were analyzed using linear regression. Features of ADHD were significantly reduced at follow-up (p < 0.001). Items with the greatest reduction were items focusing on core aspects of the diagnostic criteria for ADHD. Fewer children were in the at-risk range for ADHD on the Conners 10-item scale at follow-up but this did not reach statistical significance (49% vs. 43%; p = 0.481). Factors independently significantly associated with improvement in ADHD symptoms on multivariable analysis were higher baseline scores (p < 0.001), seizure-free status (p = 0.029), and right-sided surgery (p = 0.031). Children who undergo epilepsy surgery have a high rate of ADHD symptoms. Parent-rated symptoms of ADHD improved at 2-year follow-up after epilepsy surgery. All children undergoing epilepsy surgery should undergo assessment for ADHD at baseline and follow-up.

Neurodevelopmental problems should be considered in children with febrile seizures.

AIM: Clinical developmental phenotyping of four- to five-year-old children with febrile seizures (FSs). METHODS: Children with FS (n = 157, corresponding to 3.7% of the targeted general population of four-five-year-olds) had been identified at child healthcare centres in Gothenburg. Parents of 73 children (41 boys, 32 girls) accepted participation in the present study. The assessments included a neuropaediatric assessment, Movement ABC, Wechsler Preschool and Primary Scale of Intelligence-III and parent questionnaires (Five-to-Fifteen (FTF) and Strengths and Difficulties Questionnaire (SDQ)). Hospital records were reviewed, when applicable. RESULTS: One-third of the children had at least one DSM-5 neurodevelopmental disorder diagnosis or marked developmental problems within areas of attention, activity regulation, behaviour, speech and language, general cognition or motor functioning. No differences were found between children with single vs recurrent or simple vs complex FS. CONCLUSION: Febrile seizure are relatively often associated with Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations (ESSENCEs). We found no indications that ESSENCE might be caused by FS per se. However, the results suggest that child healthcare professionals should consider the possibility of ESSENCE in children with a history of FS.

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.

Cerebellar mutism syndrome in children with brain tumours of the posterior fossa.

BACKGROUND: Central nervous system tumours constitute 25% of all childhood cancers; more than half are located in the posterior fossa and surgery is usually part of therapy. One of the most disabling late effects of posterior fossa tumour surgery is the cerebellar mutism syndrome (CMS) which has been reported in up to 39% of the patients but the exact incidence is uncertain since milder cases may be unrecognized. Recovery is usually incomplete. Reported risk factors are tumour type, midline location and brainstem involvement, but the exact aetiology, surgical and other risk factors, the clinical course and strategies for prevention and treatment are yet to be determined. METHODS: This observational, prospective, multicentre study will include 500 children with posterior fossa tumours. It opened late 2014 with participation from 20 Nordic and Baltic centres. From 2016, five British centres and four Dutch centres will join with a total annual accrual of 130 patients. Three other major European centres are invited to join from 2016/17. Follow-up will run for 12 months after inclusion of the last patient. All patients are treated according to local practice. Clinical data are collected through standardized online registration at pre-determined time points pre- and postoperatively. Neurological status and speech functions are examined pre-operatively and postoperatively at 1-4 weeks, 2 and 12 months. Pre- and postoperative speech samples are recorded and analysed. Imaging will be reviewed centrally. Pathology is classified according to the 2007 WHO system. Germline DNA will be collected from all patients for associations between CMS characteristics and host genome variants including pathway profiles. DISCUSSION: Through prospective and detailed collection of information on 1) differences in incidence and clinical course of CMS for different patient and tumour characteristics, 2) standardized surgical data and their association with CMS, 3) diversities and results of other therapeutic interventions, and 4) the role of host genome variants, we aim to achieve a better understanding of risk factors for and the clinical course of CMS - with the ultimate goal of defining strategies for prevention and treatment of this severely disabling condition. TRIAL REGISTRATION: Clinicaltrials.gov : NCT02300766 , date of registration: November 21, 2014.

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.

Prevalence of Febrile Seizures, Epilepsy, and Other Paroxysmal Attacks in a Swedish Cohort of 4-Year-Old Children.

A questionnaire about any type of seizures was distributed to parents at the children's 4-year health surveillance at Child Healthcare Centers in Gothenburg, Sweden, to analyze the prevalence of febrile seizures (FS), epilepsy, and other paroxysmal attacks. Parents who reported any kind of seizures in their child were subsequently contacted by telephone to confirm the information given and to invite the child to a clinical assessment. In addition, hospital registers and individual records were checked of the appropriate age group as regards a diagnosis of epilepsy or febrile seizures. Parents of 4,290 of 6,076 eligible children (71%) completed the questionnaire. For 252 children (5.9%), any type of paroxysmal attack was reported: FS in 157/4,290 children (3.7%), epilepsy in 22/4,290 (0.5%), and other paroxysmal attacks in 75/4,290 (1.7%). Epilepsy developed in 4 out of 157 (2.5%) children with FS before their fifth birthday. This population-based study, covering all types of paroxysmal attacks in preschool children revealed a total prevalence of nearly 6%, the largest group being FS. The total rate of paroxysmal attacks in preschool children is equal to the rate of developmental/neuropsychiatric disorders in this age group. The conditions constitute a large group in pediatrics and entail considerable concern among parents.

Parental experiences before and long-term after their children's hemispherotomy - A population-based qualitative study.

Severe childhood epilepsy has an impact on the whole family. For selected children, hemispherotomy is the treatment of choice. The aim of this study was to explore parents' experiences before and after hemispherotomy as reported at a long-term follow-up and their view on received information and support. This was a population-based qualitative descriptive study, using qualitative content analysis of interviews. Seven to eighteen years after hemispherotomy, parents of twenty-one operated children were interviewed about the family life situation, expectations before surgery, and support and information before and after surgery. Before surgery, the theme 'Living in a chaotic bubble' illuminates how parents felt: the family lived in isolation, they felt both dissatisfaction and satisfaction about support and information, and they experienced that surgery was a question about life or death. After surgery, the theme 'Hovering between success and disaster' illuminates how parents hovered between happiness if the surgery was successful and sadness about e.g., complications and behavior problems. They experienced both excellent and poor support, in hospital and at rehabilitation. Regardless of all concerns, parents were satisfied that the child had received an operation. The hemispherotomies were successful and generated a better life situation. However, in order to cope, families need support and information throughout the whole process, from the onset of epilepsy and for a long time after surgery. If the child has behavior problems, an assessment should be made before surgery in order for the families to get adequate support. The specialist team needs to be involved as early as possible and follow the families for several years after surgery. Focus should be on the whole family, if needed including grandparents; family-centered care might be relevant for this patient group.

Is there an association between the level of grandiose narcissism severity of psychopathology?

BACKGROUND: Narcissism is a personality trait associated with both psychological health and resilience as well as with aggression and interpersonal problems. AIM: This study compares levels of total narcissism and subscale scores in inpatients, outpatients and a community sample. METHODS: Inpatients (N = 186) were recruited from consecutively admitted patients to two closed units, and the outpatient group (N = 144) consisted of patients attending a psychiatric outpatient clinic. The patients and a normative community sample (N = 437) all filled in the Narcissistic Personality Inventory questionnaire (NPI-29). RESULTS: The NPI total and subscales scores showed considerable gender differences. Among men only the Uniqueness/Entitlement subscale showed significant group differences, with inpatients showing higher mean score than the two other groups. Among women three factors, Leadership/Power, Superiority/Arrogance, and Uniqueness/ Entitlement, showed significant differences between the different levels of psychopathology. The outpatient female group regularly had the lowest group mean scores. The NPI-29 scores of the normative group showed weak internal consistencies. CONCLUSION: Our hypothesis of a significant association between mean levels of total narcissism and subscale scores and severity of psychopathology was not supported.

Adolescents and social support situations.

The present study concerned adolescents' needs for social support with a focus on specific situations. The Adolescent Need for Social Support Questionnaire (ANSSQ) was developed based on qualitative interviews with typically developing adolescents about situations in which they need parent support. The questionnaire was tested on a sample of 380 Swedish 15-year-olds. A 3-component structure reflecting the dimensions "Home and school", "Low mood", and "Sex and alcohol" was tested in SEM analyses. Scales based on these dimensions, measuring support from parents and peers, yielded satisfactory psychometric results. Parent support was preferred over peer support for "Home and school" situations; in the other two areas peers were more likely to be the support providers. Females turned more often to parents and friends for support than males. Seeking parental support was positively related to adolescent disclosure and negatively related to adolescent secrecy, indicating convergent and discriminant validity. Further validation of the ANSSQ is discussed. The current study points to possibilities for adapting measures of social support to contexts.

Health-related quality of life and emotional well-being in parents of children with epilepsy referred for presurgical evaluation in Sweden.

PURPOSE: The purpose of this study was to assess and compare health-related quality of life (HRQoL) and emotional well-being in mothers and fathers of children with drug-resistant epilepsy, referred for presurgical evaluation in Sweden. METHODS: Mothers (n=117) and fathers (n=102) of 122 children (0-18 years) completed the generic 36-item Short Form Health Survey (SF-36) and the Hospital Anxiety and Depression Scale (HADS). Mothers' and fathers' SF-36 scores were compared with age-adjusted Swedish population values using the independent t-tests. Differences in the proportions of mothers vs. fathers classified as 'noncases' or 'possible/probable' clinical cases of anxiety (HADS-A) and depression (HADS-D), respectively, were assessed with the chi-square test. Parents' HADS scores were also compared using independent t-tests. RESULTS: Mothers had significantly lower scores compared with norms on 6 of the 8 SF-36 domains (p<0.01), while fathers had significantly lower scores on 4 of the domains (p<0.01). Mothers had significantly lower scores than fathers on 4 of the SF-36 domains (p<0.05). Significantly more mothers than fathers scored below the population mean for the SF-36 Mental Component Summary score. A significantly larger proportion of mothers than fathers had 'possible/probable' anxiety (52% vs. 38%) but not depression (30% vs. 22%). Mothers had significantly worse scores than fathers on HADS-A (p<0.01) but not on HADS-D. CONCLUSION: Mothers and fathers of children with drug-resistant epilepsy have diminished HRQoL compared with population norms. Symptoms of anxiety appear to be more common than symptoms of depression. Mothers experienced higher levels of anxiety, but not depression, than fathers and scored lower than fathers on vitality, mental health, and Mental Component Summary of the SF-36. There is a need to identify contributory factors and interventions to ameliorate these difficulties.

Long-term follow-up after callosotomy--a prospective, population based, observational study.

OBJECTIVE: Analyze the long-term outcome of callosotomies with regard to seizure types and frequencies and antiepileptic drug treatment. METHODS: This longitudinal observational study is based on data from the prospective Swedish National Epilepsy Surgery Register. Thirty-one patients had undergone callosotomy in Sweden 1995-2007 and had been followed for 2 and 5 or 10 years after surgery. Data on their seizure types and frequencies, associated impairments, and use of antiepileptic drugs have been analyzed. RESULTS: The median total number of seizures per patient and month was reduced from 195 before surgery to 110 two years after surgery and 90 at the long-term follow-up (5 or 10 years). The corresponding figures for drop attacks (tonic or atonic) were 190 before surgery, 100 2 years after surgery, and 20 at the long-term follow-up. Ten (56%) of the 18 patients with drop attacks were free from drop attacks at long-term follow-up. Three of the remaining eight patients had a reduction of >75%. At long-term follow-up, four were off medication. Only one of the 31 patients had no neurologic impairment. SIGNIFICANCE: The present population-based, prospective observational study shows that the corpus callosotomy reduces seizure frequency effectively and sustainably over the years. Most improvement was seen in drop attacks. The improvement in seizure frequency over time shown in this study suggests that callosotomy should be considered at an early age in children with intractable epilepsy and traumatizing drop attacks.