Methotrexate polyglutamates as a potential marker of adherence to long-term therapy in children with juvenile idiopathic arthritis and juvenile dermatomyositis: an observational, cross-sectional study

Introduction: Methotrexate (MTX) is a cornerstone of treatment in a wide variety of inflammatory conditions, including juvenile idiopathic arthritis (JIA) and juvenile dermatomyositis (JDM). However, owing to its narrow therapeutic index and the considerable interpatient variability in clinical response, monitoring of adherence to MTX is important. The present study demonstrates the feasibility of using methotrexate polyglutamates (MTXPGs) as a biomarker to measure adherence to MTX treatment in children with JIA and JDM.
Methods: Data were collected prospectively from a cohort of 48 children (median age 11.5 years) who received oral or subcutaneous (SC) MTX therapy for JIA or JDM. Dried blood spot samples were obtained from children by finger pick at the clinic or via self- or parent-led sampling at home, and they were analysed to determine the variability in MTXPG concentrations and assess adherence to MTX therapy.
Results: Wide fluctuations in MTXPG total concentrations (>2.0-fold variations) were found in 17 patients receiving stable weekly doses of MTX, which is indicative of nonadherence or partial adherence to MTX therapy. Age (P = 0.026) and route of administration (P = 0.005) were the most important predictors of nonadherence to MTX treatment. In addition, the study showed that MTX dose and route of administration were significantly associated with variations in the distribution of MTXPG subtypes. Higher doses and SC administration of MTX produced higher levels of total MTXPGs and selective accumulation of longer-chain MTXPGs (P < 0.001 and P < 0.0001, respectively).
Conclusions: Nonadherence to MTX therapy is a significant problem in children with JIA and JDM. The present study suggests that patients with inadequate adherence and/or intolerance to oral MTX may benefit from SC administration of the drug. The clinical utility of MTXPG levels to monitor and optimise adherence to MTX in children has been demonstrated.Trial Registration: ISRCTN Registry identifier: ISRCTN93945409 . Registered 2 December 2011.

Non-adherence to therapy in children with cystic fibrosis

Hawthorne N., Hawwa A.F., Shields M.D., Reid A.J., McElnay J.C. (2011) Non-adherence to therapy in children with cystic fibrosis. Pediatric Pulmonology, 46: 408.

Behavior problems in children requiring inpatient rehabilitation treatment for asthma

Forty-eight asthmatic children (age 6-16 years), inpatients at the Hugh McMillan Medical Centre, were rated by their parents on their behavior using Achenbach's Child Behaviour Checklist. Completed checklists were used to determine normalized T scores for behavior syndromes, and these were compared against norms for clinically referred and nonreferred children. Behavior problems were elevated compared with nonreferred children for both boys and girls, with boys scoring at a clinical level. While many behavior problems were recognized, somatic complaints was a prominent syndrome, particularly for those in the 6-11-year age group.

Fear of oxygen therapy for children in Malawi

BACKGROUND: Although pneumonia is a common cause of death in children in Malawi, healthcare staff frequently encounter patients or carers who refuse oxygen therapy. This qualitative study documents factors that influence acceptance or refusal of oxygen therapy for children in Malawi.

METHODS: Nine group interviews involving 86 participants were held in community and hospital settings in rural and urban Malawi. Eleven in-depth interviews of healthcare staff providing oxygen were held in a central hospital. Thematic analysis of transcripts of the audio recordings was carried out to identify recurring themes.

RESULTS: Similar ideas were identified in the group interviews and in-depth staff interviews. Past experiences of oxygen use (direct and indirect, positive and negative) had a strong influence on views of oxygen. A recurrent theme was fear of oxygen, often due to a perceived association between death and recent oxygen use. Fears were intensified by a lack of familiarity with equipment used to deliver oxygen, distrust of medical staff and concerns about cost of oxygen.

CONCLUSIONS: This study identifies reasons for refusal of oxygen therapy for children in a low-income country. Findings from the study suggest that training of healthcare staff to address fears of parents, and information, education and communication (IEC) approaches that improve public understanding of oxygen and provide positive examples of its use are likely to be helpful in improving uptake of oxygen therapy in Malawi.

Efficacy and Acceptability of Reduced Intensity Constraint-Induced Movement Therapy for Children Aged 9–11 years with Hemiplegic Cerebral Palsy: A Pilot Study

OBJECTIVE: Assess efficacy and acceptability of reduced intensity constraint-induced movement therapy (CIMT) in children with cerebral palsy (CP).

METHODS: Single-subject research design and semi-structured interviews. Children (9-11y) with hemiplegia underwent five baseline assessments followed by two weeks CIMT. Six further assessments were performed during treatment and follow-up phases. The primary outcome was the Melbourne Assessment of Unilateral Upper Limb Function (MUUL). Quantitative data were analysed using standard single-subject methods and qualitative data by thematic analysis.

RESULTS: Four of the seven participants demonstrated statistically significant improvements in MUUL (3-11%, p < .05). Two participants achieved significant improvements in active range of motion but strength and tone remained largely unchanged. Qualitative interviews highlighted limitations of the restraint, importance of family involvement, and coordination of treatment with education.

CONCLUSIONS: Reduced intensity CIMT may be effective for some children in this population; however it is not suitable for all children with hemiplegia.

The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.

Unfractioned heparin therapy in infants and children

Unfractionated heparin is frequently used in tertiary pediatric centers for the prophylaxis and treatment of thromboembolic disease. Recent evidence suggests that the clinical outcomes of unfractionated heparin therapy in children are poor, as determined by target-range achievement and adverse-event rates. These reports of poor outcomes may be related to an age-dependent mechanism of action of unfractionated heparin. Furthermore, several published studies have indicated that unfractionated heparin–monitoring assays currently in clinical use have significant limitations that likely affect the safety and efficacy of anticoagulant management. This review summarizes the growing body of evidence suggesting that pediatric-specific recommendations for unfractionated heparin therapy management are required to improve clinical outcomes related to this commonly prescribed medication.

ABA-Based Programs for Children Diagnosed With Autism Spectrum Disorder: Parental and Professional Experiences at School and at Home

Having a child diagnosed with Autism Spectrum Disorder (ASD) poses a range of challenges to families, many of which can be addressed through appropriate intervention. A study of parental (n = 95) and professional (n = 67) experiences was carried out in relation to two settings: (a) schools that provided intensive interventions based on the science of Applied Behavior Analysis (ABA), and (b) non-intensive ABA-based home programs. Results show that parents whose children attend ABA-based schools were generally more satisfied with their child's educational provision, monitoring procedures, and level of staff training, than parents who were not offered ABA-based education in schools. © 2012 Copyright Taylor and Francis Group, LLC.

Developing outcomes for educational services: a children's rights-based approach

This article provides a rationale for and insight into an explicit children's rights-based approach to the identification of outcomes for proposed educational interventions. It presents a critical reflection on a research project which sought to integrate international children's rights standards into the design of services through a children's rights audit of potential outcomes and the meaningful engagement of children in the research and service design processes. While children are involved increasingly as co-researchers in qualitative studies, it is less common for this to occur in quantitative studies. This article offers some additional insight into children's participation in the interpretation of data from a large-scale baseline survey. The article concludes with an argument that international children's rights law provides not just a legal imperative but also a comprehensive framework with which to assert the case for increased recognition of children as salient stakeholders in all aspects of service design.

A parenting intervenion for childhood behavioral problems: a randomised controlled trial in disadvantaged Community-based settings:A randomized controlled trial in disadvantaged community-based settings

Objective: A community-based randomized controlled trial (RCT) was conducted in urban areas characterized by high levels of disadvantage to test the effectiveness of the Incredible Years BASIC parent training program (IYBP) for children with behavioral problems. Potential moderators of intervention effects on child behavioral outcomes were also explored. Method: Families were included if the child (aged 32-88 months) scored above a clinical cutoff on the Eyberg Child Behavior Inventory (ECBI). Participants (n = 149) were randomly allocated on a 2:1 ratio to an intervention group (n = 103) or a waiting-list control group (n = 46). Child behavior, parenting skills, and parent well-being were assessed at baseline and 6 months later using parent-report and independent observations. An intention-to-treat analysis of covariance was used to examine postintervention differences between groups. Results: Statistically significant differences in child disordered behavior favored the intervention group on the ECBI Intensity (effect size = 0.7, p

Somatic Cough Syndrome (Previously Referred to as Psychogenic Cough) and Tic Cough (Previously Referred to as Habit Cough) in Adults and Children: CHEST Guideline and Expert Panel Report

BACKGROUND: We conducted a systematic review on the management of psychogenic cough, habit cough, and tic cough to update the recommendations and suggestions of the 2006 guideline on this topic.

METHODS: We followed the American College of Chest Physicians (CHEST) methodologic guidelines and the Grading of Recommendations, Assessment, Development, and Evaluation framework. The Expert Cough Panel based their recommendations on data from the systematic review, patients' values and preferences, and the clinical context. Final grading was reached by consensus according to Delphi methodology.

RESULTS: The results of the systematic review revealed only low-quality evidence to support how to define or diagnose psychogenic or habit cough with no validated diagnostic criteria. With respect to treatment, low-quality evidence allowed the committee to only suggest therapy for children believed to have psychogenic cough. Such therapy might consist of nonpharmacologic trials of hypnosis or suggestion therapy, or combinations of reassurance, counseling, and referral to a psychologist, psychotherapy, and appropriate psychotropic medications. Based on multiple resources and contemporary psychologic, psychiatric, and neurologic criteria (Diagnostic and Statistical Manual of Mental Disorders, 5th edition and tic disorder guidelines), the committee suggests that the terms psychogenic and habit cough are out of date and inaccurate.

CONCLUSIONS: Compared with the 2006 CHEST Cough Guidelines, the major change in suggestions is that the terms psychogenic and habit cough be abandoned in favor of somatic cough syndrome and tic cough, respectively, even though the evidence to do so at this time is of low quality.

School-based counseling using systematic feedback: A cohort study evaluating outcomes and predictors of change

The outcomes of school-based counseling incorporating the Partners for Change Outcome Monitoring System (PCOMS) were evaluated using a cohort design, with multilevel modeling to identify predictors of change. Participants were 288 7-11 year olds experiencing social, emotional or behavioral difficulties. The intervention was associated with significant reductions in psychological distress, with a pre-post effect size (d) of 1.49 on the primary outcome measure and 88.7% clinical improvement. Greater improvements were found for disabled children, older children, and where CBT methods were used. The findings provide support for the use of systematic feedback in therapy with children.