Young adults as users of adult healthcare : experiences of young adults with complex or life-limiting conditions

Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from paediatrics is increasingly under discussion. This paper contributes to these debates. It reports a qualitative study of the experiences of young adults - all with complex chronic health conditions - as users of adult health services. Key findings from the study are reported, including an exploration of factors that help to explain interviewees' experiences. Study findings are discussed in the context of existing evidence from young adults in adult healthcare settings and theories of 'young adulthood'. Implications for training and practice are considered, and priorities for future research are identified

Parents' experiences of psychoeducational sleep management interventions : a qualitative study of parents of children with neurodisabilities

Psychoeducational approaches to managing behavioral sleep problems in children with neurodisabilities are directed at the parent, increasing their knowledge and understanding of sleep and requiring them to change the way they manage sleep disturbance. Given parental engagement with and adherence to an intervention are critical to its success, it is important we understand parents’ experiences of participating in interventions of this nature. It is surprising therefore that, to date, research in this area is extremely limited. This article reports the findings from a qualitative study of 35 parents who had received a psychoeducational sleep management intervention (SMI) delivered through 1 of the following modes: a half-day workshop (n = 8); a 4-session group-delivered intervention (n = 15); or 1-to-1 work with a specialist sleep practitioner (n = 12). The study was part of a larger program of work evaluating SMIs for children with developmental disorders, autistic spectrum conditions, or both. Purposeful sampling was used to represent intervention outcome, child’s diagnosis, parents’ education, and partner involvement in the intervention. Focus groups and individual interviews were used to gather data. The data were subject to a thematic analysis in relation to (a) parents’ descriptions of the processes by which a SMI leads to improvements in their child’s sleep; (b) parents’ views of the factors which hinder the achievement of positive intervention outcomes; and (c) parents’ views on intervention intensity and mode of delivery. The implications of the findings in terms of the design, content, and delivery of such interventions are discussed

Replacing home visits with telephone calls to support parents implementing a sleep management intervention : findings from a pilot study and implications for future research

Background - Resource constraints may inhibit the provision of appropriate interventions for children with neurodisabilities presenting with behavioural sleep problems. Telephone calls (TC), as opposed to home visits (HV), may be a more resource efficient means of supporting these families. Objective - To conduct a preliminary investigation exploring the feasibility and acceptability of replacing HV with TC to support parents implementing sleep management strategies and to gather evidence to inform the design and methods of a full trial. Methods - Parents referred to a sleep management intervention routinely delivered by a community paediatric team were alternately allocated to receive implementation support via HV (n = 7) or TC (n = 8). Activity logs recorded the frequency, duration and mode of support. Parents and practitioners were interviewed about their experiences of receiving/delivering the intervention. Results - Intervention drop-out was low, the frequency, number of contacts and intervention duration appeared comparable. Parents allocated TC received less contact time. Parents valued implementation support irrespective of delivery mode and practitioners reported that despite initial reservations, implementation support via TC appeared to work well. Conclusions - TC appears an acceptable and convenient mode of delivering sleep support, valued by both parents and practitioners. We recommend a full-scale trial to investigate effectiveness

Open-source mapping and services for Web-based land-cover validation

Monitoring land-cover changes on sites of conservation importance allows environmental problems to be detected, solutions to be developed and the effectiveness of actions to be assessed. However, the remoteness of many sites or a lack of resources means these data are frequently not available. Remote sensing may provide a solution, but large-scale mapping and change detection may not be appropriate, necessitating site-level assessments. These need to be easy to undertake, rapid and cheap. We present an example of a Web-based solution based on free and open-source software and standards (including PostGIS, OpenLayers, Web Map Services, Web Feature Services and GeoServer) to support assessments of land-cover change (and validation of global land-cover maps). Authorised users are provided with means to assess land-cover visually and may optionally provide uncertainty information at various levels: from a general rating of their confidence in an assessment to a quantification of the proportions of land-cover types within a reference area. Versions of this tool have been developed for the TREES-3 initiative (Simonetti, Beuchle and Eva, 2011). This monitors tropical land-cover change through ground-truthing at latitude / longitude degree confluence points, and for monitoring of change within and around Important Bird Areas (IBAs) by Birdlife International and the Royal Society for the Protection of Birds (RSPB). In this paper we present results from the second of these applications. We also present further details on the potential use of the land-cover change assessment tool on sites of recognised conservation importance, in combination with NDVI and other time series data from the eStation (a system for receiving, processing and disseminating environmental data). We show how the tool can be used to increase the usability of earth observation data by local stakeholders and experts, and assist in evaluating the impact of protection regimes on land-cover change

Extent and nature of duplication in PROSPERO using COVID-19-related registrations : a retrospective investigation and survey

OBJECTIVES: During COVID-19, the International Prospective Register of Systematic Reviews (PROSPERO) experienced a surge in registrations for COVID-19-related systematic reviews, and duplication of research questions became apparent. Duplication can waste funding, time and research effort and make policy making more difficult.This project explored the extent of and reasons for duplication of COVID-19-related systematic review registrations in PROSPERO during the pandemic. DESIGN: Retrospective analysis of COVID-19-related registrations in PROSPERO, and a qualitative survey. SETTING: PROSPERO was searched for registrations related to four COVID-19 research areas: epidemiology, rehabilitation, transmission and treatments. METHODS: Records identified were compared using Population, Intervention/Exposure, Comparator, Outcome, Study Design (PICOS) elements of PROSPERO registration forms. Registrations with similar or identical PICOS were evaluated further as 'duplicates'.Authors of 'duplicate' registrations were invited to complete a survey asking whether they searched PROSPERO prior to registration, identified similar reviews and, if so, why they continued with their review. RESULTS: 1054 COVID-19 reviews were registered between March 2020 and January 2021, of which 138 were submitted when at least one similar protocol was already registered in PROSPERO. Duplication was greatest in reviews of COVID-19 treatments; for example, there were 14 similar reviews evaluating the efficacy of hydroxychloroquine.From 138 authors invited to take part in the survey, we received 41 responses. Most respondents said that they identified similar reviews when they searched PROSPERO prior to registration. Main reasons given for 'duplication' were differences in PICOS or planned analyses (n=13), poor quality of previous registrations (n=2) and the need to update evidence (n=3). CONCLUSIONS: This research highlights that registration of similar and duplicate systematic reviews related to COVID-19 in PROSPERO occurred frequently. Awareness of research waste is required, and initial checking for similar reviews should be embedded within good review practice

Riding the Rapids: Living with autism or disability - An evaluation of a parenting support intervention for parents of disabled children

Evidence on the effectiveness of interventions to support parents of disabled children to manage their child's behaviour problems is limited. The aim of this study was to evaluate a group-delivered intervention (Riding the Rapids) which was specifically developed for parents of a child with a disability or autistic spectrum condition. This programme has been routinely delivered by a community-based mental health team across an urban, multi-ethnic locality for a number of years. A non-randomised controlled study design comprising an intervention group (n = 48) and comparator (no intervention) group (n = 28) was used to evaluate the effects of the intervention on child behaviour (Eyberg Child Behaviour Inventory; parent-set goals) and parenting efficacy and satisfaction (Parents Sense of Competence Scale) at post-intervention and six-month follow-up. Data on costs to the service provider of delivering the intervention were also collected. Receipt of the intervention was associated with significant reductions in parent-reported behaviour problems and significant improvements in parenting efficacy and satisfaction. At six-month follow-up, progress towards achieving parent-set child behaviour goals and parenting satisfaction had been maintained. Post hoc analysis suggests parents who do not have English as a first language may not benefit as much as other parents from this intervention. Findings suggest this is a promising intervention for parents of a child with a disability that is likely to be less resource intensive to service providers than individually delivered interventions. Limitations and implications for future research are discussed

A novel dried blood spot-LCMS method for the quantification of methotrexate polyglutamates as a potential marker for methotrexate use in children

Objective: Development and validation of a selective and sensitive LCMS method for the determination of methotrexate polyglutamates in dried blood spots (DBS). Methods: DBS samples [spiked or patient samples] were prepared by applying blood to Guthrie cards which was then dried at room temperature. The method utilised 6-mm disks punched from the DBS samples (equivalent to approximately 12 μl of whole blood). The simple treatment procedure was based on protein precipitation using perchloric acid followed by solid phase extraction using MAX cartridges. The extracted sample was chromatographed using a reversed phase system involving an Atlantis T3-C18 column (3 μm, 2.1x150 mm) preceded by Atlantis guard column of matching chemistry. Analytes were subjected to LCMS analysis using positive electrospray ionization. Key Results: The method was linear over the range 5-400 nmol/L. The limits of detection and quantification were 1.6 and 5 nmol/L for individual polyglutamates and 1.5 and 4.5 nmol/L for total polyglutamates, respectively. The method has been applied successfully to the determination of DBS finger-prick samples from 47 paediatric patients and results confirmed with concentrations measured in matched RBC samples using conventional HPLC-UV technique. Conclusions and Clinical Relevance: The methodology has a potential for application in a range of clinical studies (e.g. pharmacokinetic evaluations or medication adherence assessment) since it is minimally invasive and easy to perform, potentially allowing parents to take blood samples at home. The feasibility of using DBS sampling can be of major value for future clinical trials or clinical care in paediatric rheumatology. © 2014 Hawwa et al

Validity of a three-variable juvenile arthritis disease activity score in children with new-onset juvenile idiopathic arthritis

<p>Objectives To investigate the validity and feasibility of the Juvenile Arthritis Disease Activity Score (JADAS) in the routine clinical setting for all juvenile idiopathic arthritis (JIA) disease categories and explore whether exclusion of the erythrocyte sedimentation rate (ESR) from JADAS (the ‘JADAS3’) influences correlation with single markers of disease activity.</p> <p>Methods JADAS-71, JADAS-27 and JADAS-10 were determined at baseline for an inception cohort of children with JIA in the Childhood Arthritis Prospective Study. JADAS3-71, JADAS3-27 and JADAS3-10 were determined using an identical formula but with exclusion of ESR. Correlation of JADAS with JADAS3 and single measures of disease activity/severity were determined by category.</p> <p>Results Of 956 eligible children, sufficient data were available to calculate JADAS-71, JADAS-27 and JADAS-10 at baseline in 352 (37%) and JADAS3 in 551 (58%). The median (IQR) JADAS-71, JADAS-27 and JADAS-10 for all 352 children was 11 (5.9–18), 10.4 (5.7–17) and 11 (5.9–17.3), respectively. Median JADAS and JADAS3 varied significantly with the category (Kruskal–Wallis p=0.0001), with the highest values in children with polyarticular disease patterns. Correlation of JADAS and JADAS3 across all categories was excellent. Correlation of JADAS71 with single markers of disease activity/severity was good to moderate, with some variation across the categories. With the exception of ESR, correlation of JADAS3-71 was similar to correlation of JADAS-71 with the same indices.</p> <p>Conclusions This study is the first to apply JADAS to all categories of JIA in a routine clinical setting in the UK, adding further information about the feasibility and construct validity of JADAS. For the majority of categories, clinical applicability would be improved by exclusion of the ESR.</p&gt

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

An evaluation of the Cygnet parenting support programme for parents of children with autism spectrum conditions

Parents of children on the autistic spectrum often struggle to understand the condition and, related to this, manage their child’s behaviour. Cygnet is a parenting intervention which aims to help parents address these difficulties, consequently improving parenting confidence. It is widely used in the United Kingdom (UK). Despite this, there have been few evaluations. This paper reports a small-scale pragmatic evaluation of Cygnet as it was routinely delivered in two English cities. A non-randomised controlled study of outcomes for parents (and their children) was conducted. Data regarding intervention fidelity and delivery costs were also collected. Parents either attending, or waiting to attend, Cygnet were recruited (intervention group: IG, n=35; comparator group: CG, n=32). Parents completed standardised measures of child behaviour and parenting sense of competence pre- and post-intervention, and at three-month follow-up (matched time points for CG). Longer-term outcomes were measured for the IG. IG parents also set specific child behaviour goals. Typically, the programme was delivered as specified by the manual. Attending Cygnet was associated with significant improvements in parenting satisfaction and the specific child behaviour goals. Findings regarding other outcomes were equivocal and further evaluation is required. We conclude that Cygnet is a promising intervention for parents of children with autism in terms of, at least, some outcomes