Adherence to antiepileptic medicines in children: A multiple-methods assessment involving dried blood spot sampling

Purpose: To evaluate adherence to prescribed antiepileptic drugs (AEDs) in children with epilepsy using a combination of adherence-assessment methods.
Methods: A total of 100 children with epilepsy (=17 years old) were recruited. Medication adherence was determined via parental and child self-reporting (=9 years old), medication refill data from general practitioner (GP) prescribing records, and via AED concentrations in dried blood spot (DBS) samples obtained from children at the clinic and via self- or parental-led sampling in children's own homes. The latter were assessed using population pharmacokinetic modeling. Patients were deemed nonadherent if any of these measures were indicative of nonadherence with the prescribed treatment. In addition, beliefs about medicines, parental confidence in seizure management, and the presence of depressed mood in parents were evaluated to examine their association with nonadherence in the participating children.
Key Findings: The overall rate of nonadherence in children with epilepsy was 33%. Logistic regression analysis indicated that children with generalized epilepsy (vs. focal epilepsy) were more likely (odds ratio [OR] 4.7, 95% confidence interval [CI] 1.37-15.81) to be classified as nonadherent as were children whose parents have depressed mood (OR 3.6, 95% CI 1.16-11.41).
Significance: This is the first study to apply the novel methodology of determining adherence via AED concentrations in clinic and home DBS samples. The present findings show that the latter, with further development, could be a useful approach to adherence assessment when combined with other measures including parent and child self-reporting. Seizure type and parental depressed mood were strongly predictive of nonadherence. © 2013 International League Against Epilepsy.
Key Words: Adherence, Epilepsy, Dried blood spots, MARS, Depressed mood.

Physical Activity, Gender, Weight Status, and Wellbeing in 9- to 11-Year-Old Children: A Cross-Sectional Survey

Background: The aim of this study was to examine the relationship between physical activity and wellbeing in children, and to further explore the extent to which this may vary by gender and weight status. Method: A representative sample of 1424 9- to 11-year-olds completed a self-report measure of physical activity, the Child Health and Illness Profile, KIDSCREEN, and a self-esteem scale. Body Mass Index (BMI) measurements were also obtained. Results: 24% of children achieved the recommended level of 60 minutes of moderate-tovigorous intensity physical activity (MVPA) per day, with more boys than girls achieving this level. Children achieving the recommended level of MVPA scored significantly higher on measures of the Child Health and Illness Profile (F(5, 1354) = 5.03; P < .001), KIDSCREEN (F(3, 1298) = 4.68; P = .003), and self-esteem (F(1,1271) = 18.73; P = .003) than less active children although the effect sizes were small (ηp2 ≈ .01). Substantial gender differences in wellbeing were found reflecting gender specific behaviors and socialization. Weight status had negligible influence on wellbeing. Conclusions: Children who meet the recommended guidelines of MVPA were more likely to have better wellbeing. When attempting to raise children’s physical activity levels consideration should be given to the specific relationships between wellbeing and physical activity.

Adding metadata to Orc to support reasoning about grid programs

Following earlier work demonstrating the utility of Orc as a means of specifying and reasoning about grid applications we propose the enhancement of such specifications with metadata that provide a means to extend an Orc specification with implementation oriented information. We argue that such specifications provide a useful refinement step in allowing reasoning about implementation related issues ahead of actual implementation or even prototyping. As examples, we demonstrate how such extended specifications can be used for investigating security related issues and for evaluating the cost of handling grid resource faults. The approach emphasises a semi-formal style of reasoning that makes maximum use of programmer domain knowledge and experience.

Interventions to build resilience in children of problem drinkers

This is the protocol for a review and there is no abstract. The objectives are as follows:
-To assess the effects of interventions for building resilience in children or young people living with parents/carers who are problem drinkers.

UNCRC and social workers' relationships with young children

This paper considers the provisions of the UNCRC and applies them to the field of child protection suggesting new ways of working that are rights compliant.

Building relationships and communicating with young children

This book uses real life case studies of detailed conversations with young children to consider the knowledge, skills and values required by social workers to engage in effective relationships with young children to safeguard their wellbeing.

Relationships matter: social worker relationships with young children

This paper reviews the recent policy developments designed to improve social workers' relationships with children and the barriers to establishing these.

Assessment of clinical response to ivacaftor with lung clearance index in cystic fibrosis patients with a G551D-CFTR mutation and preserved spirometry:A randomised controlled trial

Background: Ivacaftor has shown a clinical benefit in patients with cystic fibrosis who have the G551D-CFTR mutation and reduced lung function. Lung clearance index (LCI) using multiple-breath washout might be an alternative to and more sensitive method than forced expiratory volume in 1 s (FEV₁) to assess treatment response in the growing number of children and young adults with cystic fibrosis who have normal spirometry. The aim of the study was to assess the treatment effects of ivacaftor on LCI in patients with cystic fibrosis, a G551D-CFTR mutation, and an FEV₁ >90% predicted. Methods: This phase 2, multicentre, placebo-controlled, double-blind 2×2 crossover study of ivacaftor treatment was conducted in patients with cystic fibrosis, at least one G551D-CFTR allele, and an FEV₁ >90% predicted. Patients also had to have an LCI higher than 7·4 at screening, age of 6 years or older, and a weight higher than or equal to 15 kg. Eligible patients were randomly allocated to receive one of two treatment sequences (placebo first followed by ivacaftor 150 mg twice daily [sequence 1] or ivacaftor 150 mg twice daily first followed by placebo [sequence 2]) of 28 days' treatment in each period, with a 28-day washout between the two treatment periods. Randomisation (ratio 1:1) was done with block sizes of 4, and all site personnel including the investigator, the study monitor, and the Vertex study team were masked to treatment assignment. The primary outcome measure was change from baseline in LCI. The study is registered at ClinicalTrials.gov, NCT01262352. Findings: Between February and November, 2011, 21 patients were enrolled, of which 11 were assigned to the sequence 1 group, and 10 to the sequence 2 group. 20 of these patients received treatment and 17 completed the trial (eight in sequence 1 group and 9 in sequence 2 group). Treatment with ivacaftor led to significant improvements compared with placebo in LCI (difference between groups in the average of mean changes from baseline at days 15 and 29 was -2·16 [95% CI -2·88 to -1·44]; p<0·0001). Adverse events experienced by study participants were similar between treatment groups; at least one adverse event was reported by 15 (79%) of 19 patients who received placebo and 13 (72%) of 18 patients who received ivacaftor. No deaths occurred during study period. Interpretation: In patients with cystic fibrosis aged 6 years or older who have at least one G551D-CFTR allele, ivacaftor led to improvements in LCI. LCI might be a more sensitive alternative to FEV₁ in detecting response to intervention in these patients with mild lung disease. Funding: Vertex Pharmaceuticals Incorporated. © 2013 Elsevier Ltd.

Using demand response to deal with unexpected low wind power generation in the context of smart grid

Demand response is assumed an essential resource to fully achieve the smart grids operating benefits, namely in the context of competitive markets. Some advantages of Demand Response (DR) programs and of smart grids can only be achieved through the implementation of Real Time Pricing (RTP). The integration of the expected increasing amounts of distributed energy resources, as well as new players, requires new approaches for the changing operation of power systems. The methodology proposed aims the minimization of the operation costs in a smart grid operated by a virtual power player. It is especially useful when actual and day ahead wind forecast differ significantly. When facing lower wind power generation than expected, RTP is used in order to minimize the impacts of such wind availability change. The proposed model application is here illustrated using the scenario of a special wind availability reduction day in the Portuguese power system (8th February 2012).

Mutilations Due to Medical Disorders in Children

Soft-tissue and bone necrosis, although rare in childhood, occasionally occur in the course of infectious diseases, either viral or bacterial, and seem to be the result of hypoperfusion on a background of disseminated intravascular coagulation. Treatment consists in correction of septic shock and control of necrosis. Necrosis, once started, shows extraordinarily rapid evolution, leading to soft-tissue and bone destruction and resulting in anatomic, functional, psychological, and social handicaps. Ten mutilated children were treated from January 1986 to January 1999 in Hospital de Dona Estefaˆ nia, Lisbon, Portugal. One was recovering from hemolytic-uremic syndrome with a severe combined immunodeficiency, another malnourished, anemic child had malaria, and three had chicken pox (in one case complicated by meningococcal septicemia). There were three cases of meningococcal and two of pyocyanic septicemia (one in a burned child and one in a patient with infectious mononucleosis). The lower limbs (knee,leg, foot) were involved in five cases, the face (ear, nose, lip) in four, the perineum in three, the pelvis (inguinal region, iliac crest) in two, the axilla in one, and the upper limb (radius, hand) in two. Primary prevention is based on early recognition of risk factors and timely correction. Secondary prevention consists of immediate etiologic and thrombolytic treatment to restrict the area of necrosis. Tertiary prevention relies on adequate rehabilitation with physiotherapy and secondary operations to obtain the best possible functional and esthetic result.

Comprehensive clinical and molecular analysis of 12 families with type 1 recessive cutis laxa.

Autosomal recessive cutis laxa type I (ARCL type I) is characterized by generalized cutis laxa with pulmonary emphysema and/or vascular complications. Rarely, mutations can be identified in FBLN4 or FBLN5. Recently, LTBP4 mutations have been implicated in a similar phenotype. Studying FBLN4, FBLN5, and LTBP4 in 12 families with ARCL type I, we found bi-allelic FBLN5 mutations in two probands, whereas nine probands harbored biallelic mutations in LTBP4. FBLN5 and LTBP4 mutations cause a very similar phenotype associated with severe pulmonary emphysema, in the absence of vascular tortuosity or aneurysms. Gastrointestinal and genitourinary tract involvement seems to be more severe in patients with LTBP4 mutations. Functional studies showed that most premature termination mutations in LTBP4 result in severely reduced mRNA and protein levels. This correlated with increased transforming growth factor-beta (TGFβ) activity. However, one mutation, c.4127dupC, escaped nonsense-mediated decay. The corresponding mutant protein (p.Arg1377Alafs(*) 27) showed reduced colocalization with fibronectin, leading to an abnormal morphology of microfibrils in fibroblast cultures, while retaining normal TGFβ activity. We conclude that LTBP4 mutations cause disease through both loss of function and gain of function mechanisms.

Teaching Principled negotiation skills to parents and their children : the impact of parental involvement /

This study explored the impact of training parents and children concurrently in principled negotiation skills for the purpose of developing negotiation skills and problem solving abilities in children. A second experimental group was utilized to determine the viability of negotiation skills training of junior elementary students for the purpose of improving problem solving and conflict resolving abilities. The student population in each experimental group was trained using The Program for Young Negotiators (Curhan, 1996). A control group was also established using the remaining grade four and five students attending the participating school. These students did not receive training as part of this study. Student group distribution was as follows: Experimental group 1 (students with parent participant) consisted of 10 (5 grade five and 5 grade 4 students), Experimental group 2 students without parent participant) consisted of 48 (20 grade 4 and 28 grade 5 students), and the Control group 3 (55 grade 4 and 5 students). The impact of training was measured using the Five Factor Negotiation Scale developed for use with the Program for Young Negotiators (Curhan, 1996). This measure was employed as a pre- and post-test questionnaire to the total student population, (113 students) to determine levels of ability in each of the key elements of negotiation, personal initiative, collaboration, communication, conflict based perspective taking, and conflict resolution approach (Nakkula & Nikitopoulos, unpublished). This measure has a coefficient alpha of .75 which is acceptable for this type of affective instrument. As well, open ended ability questions designed to measure ability, knowledge, and behaviour as they relate to negotiation skill application were given to the total student population, (113 students). Finally, journals were maintained by the students in both experimental groups, and informal feedback discussions were held with students and parents participating in the study.The intent of using both qualitative and quantitative measures was to provide an overall perspective of student abilities as they related to principled negotiation skills. While the quantitative measures were from the student perspective, more qualitative information was sought from parents and teachers through informal interviews, discussions, and use of confidential feedback cards. For analysis purposes, the ability questions were randomly selected for Experimental group 2 and Control group 3 in an effort to balance the groups more equitably with Experimental group 1. The findings of this study indicate that students of the junior elementary school age can be taught how to perceive conflict in a more constructive way. However, they are not as likely to use their skills when the conflict is with a sibling as they are with a peer, a teacher, or a parent. While no statistically significant differences between mean scores for Experimental groups 1 and 2 exist some subtle differences are noted. Overall, increases in mean scores for grade 4 students exceeded the increases for grade 5 students within Experimental group 1 . The implication being that younger students benefit more from having a parent trained in principled negoUation skills than older students. The skill level of a parent in principled negotiation can not be underesUmated. Without a consistent and effective role model the likelihood of developing student skill level to a point of automaticity is greatly reduced. Enough so that perhaps the emphasis should be placed on training parents more so than the students.

Partnership for arts integration : exploring the experiences of teachers and artists working with integrated arts programs

This research acknowledges the difficulties experienced by teachers presenting integrated arts curricula. Instructional support is offered by arts organizations that provide arts partnerships with local schools boards. The study focuses on the experiences of 8 teachers from a Catholic school board in southern Ontario who participated in integrated arts programs offered by The Royal Conservatory of Music's Learning Through the Arts™ (LTTATM) program and a local art gallery's Art Based Integrated Learning (ABIL) program and examines their responses to the programs and their perception of personal and professional development through this association. Additionally, questions were posed to the . "aftisfs"from-tneSe]Jfograrrrs;-and"they liiscus·sed·how"participating in-collaboration with teachers in the development of in-school programs enabled them to experience personal and professional development as well. Seven themes emerged from the data. These themes included: teachers' feelings of a lack of preparedness to teach the arts; the value of the arts and arts partnerships in schools; the role of the artists in the education of teachers; professional development for both teachers and artists; the development of collegiality; perceptions of student engagement; and the benefits and obstacles of integrating the arts into the curriculum. This document highlights the benefits to both teachers and artists of arts partnerships between schools and outside arts organizations.

A Home Literacy Handbook for Parents With Preschool Children

The purpose of this project was to provide parents with an awareness of the role that they play in their preschool children's literacy and reading development and to create a practical handbook that parents can use to teach early literacy and reading skills to their preschool children in their home environment. The handbook was created in response to the literature that confirmed that the children benefit from developing emergent literacy skills before they enter school in kindergarten or grade 1. In addition to the information gathered from the academic literature, needs assessments were conducted in order to hear perspectives from multiple stakeholders involved in the context of this project. The needs assessment questionnaires were conducted with 4 Ontario certified grade 1 and 2 teachers, and 4 parents with preschool children or children in kindergarten or grade 1. Data collected from these participants highlighted the needs of parents and were used to create a comprehensive handbook that will hopefully be accessible and useful to a wide parent audience. The results of the research project indicated that parents would, in fact, benefit from having access to a resource such as this handbook to assist in teaching the 4 components of emergent literacy to their preschool children––oral language, alphabet knowledge, phonological awareness, and print awareness––to their preschool children.

The FCLT with Dependent Errors: an Helicopter Tour of the Quality of the Approximation

This note investigates the adequacy of the finite-sample approximation provided by the Functional Central Limit Theorem (FCLT) when the errors are allowed to be dependent. We compare the distribution of the scaled partial sums of some data with the distribution of the Wiener process to which it converges. Our setup is purposely very simple in that it considers data generated from an ARMA(1,1) process. Yet, this is sufficient to bring out interesting conclusions about the particular elements which cause the approximations to be inadequate in even quite large sample sizes.