Transitional care in clinical networks for young people with juvenile idiopathic arthritis: current situation and challenges

Clinical networks for paediatric and adolescent rheumatology are evolving, and their effect and role in the transition process between paediatric and adult services are unknown. We therefore explored the experiences of those involved to try and understand this further. Health professionals, young people with juvenile idiopathic arthritis and their families were recruited via five national health service paediatric and adolescent rheumatology specialist centres and networks across the UK. Seventy participants took part in focus groups and one-to-one interviews. Data was analysed using coding, memoing and mapping techniques to identify features of transitional services across the sector. Variation and inequities in transitional care exist. Although transition services in networks are evolving, development has lagged behind other areas with network establishment focusing more on access to paediatric rheumatology multidisciplinary teams. Challenges include workforce shortfalls, differences in service priorities, standards and healthcare infrastructures, and managing the legacy of historic encounters. Providing equitable high-quality clinically effective services for transition across the UK has a long way to go. There is a call from within the sector for more protected time, staff and resources to develop transition roles and services, as well as streamlining of local referral pathways between paediatric and adult healthcare services. In addition, there is a need to support professionals in developing their understanding of transitional care in clinical networks, particularly around service design, organisational change and the interpersonal skills required for collaborative working

“It's gym, like g-y-m not J-i-m”: Exploring the role of place in the gendering of physical activity

© 2017 Elsevier Ltd Physical activity is a highly gendered health behaviour, with women less likely than men to meet internationally accepted physical activity guidelines. In this article, we take up recent arguments on the potential of indoor spaces to illuminate processes shaping health, together with social theories of gender, to conceptualize the place of the gym as a window into understanding and intervening in wider gender disparities in physical activity. Using a triangulated strategy of qualitative methods, including semi-structured interviews, drawing, and journaling with men and women in a mid-sized Canadian city, we examine how gender influences exercise practices and mobilities in gym environments. Results of our thematic analysis reveal three socio-spatial processes implicated in the gendering of physical activity: 1) embodying gender ideals, 2) policing gender performance, and 3) spatializing gender relations. A fourth theme illustrates the situated agency some individuals enact to disrupt gendered divisions. Although women were unduly disadvantaged, both women and men experienced significant limitations on their gym participation due to the presiding gendered social context of the gym. Gender-transformative interventions that go beyond engaging women to comprehensively contend with the place-based gender relations that sustain gender hegemony are needed. While gyms are potentially sites for health promotion, they are also places where gendered inequities in health opportunities emerge

‘Where is the space for continuum?’ Gyms and the visceral "stickiness" of binary gender

© 2020 Informa UK Limited, trading as Taylor & Francis Group. This paper develops a visceral feminist geography of the gym to expand our understanding of how everyday physical activity environments are implicated in the gendered context of physical activity. The gender gap in physical activity is well-documented, with women around the world less likely than men to meet the minimum physical activity recommendations for health. Fitness gyms are popular venues for physical activity, but they are not necessarily inclusive places. Through a reflexive thematic analysis of interview and journaling data with 52 Canadian women and men gym users, we identify five visceral domains through which the gym enacts gender boundaries: the imaginary, bodily haptics, the soundscape, visual fields, and material "stuff". Each of these revealed a series of gendered dichotomies that, taken together, contribute to an overarching gender binary of unbounded masculinity and bounded femininity. We argue that these "visceralities" matter because the gym as an institution comes to codify gender differences in ways that perpetuate possibilities for practising physical activity as bifurcated ways of doing gender. One of our key findings is how women’s participation in the gym was underwritten by material expense and bodily preparatory practices that extend far beyond the gym into the geographies of their daily lives. Physical activity interventions that do not account for the multisensorial features of place may miss opportunities to reduce gendered inequities

Towards a critical geography of physical activity: Emotions and the gendered boundary-making of an everyday exercise environment

The information, practices and views in this article are those of the authors and do not necessarily reflect the opinion of the Royal Geographical Society (with IBG). © 2019 Royal Geographical Society (with the Institute of British Geographers) In this paper, we put forward a proposal for a critical geography of physical activity that attunes to experience while centring on the socio-spatial processes and power structures enabling and constraining physical activity participation. Drawing on our research that explored women's and men's emotional geographies of an everyday exercise environment – the gym – in a Canadian city, we show how this approach can identify otherwise invisible environmental influences on physical activity participation. Our thematic analysis reveals that the gym environment is generative of three place-based emotive processes of dislocation, evaluation, and sexualisation that collectively configure an unevenly gendered emotional architecture of place. Through this interstitial structure, the boundaries of localised hierarchies of masculinities and femininities become felt in ways that create tensions and anxieties, which in turn reinforce gendered boundaries on physical activity participation. Two additional themes reveal how gendered motivation and individual factors mediate negative emotional experiences. Our findings indicate that emotional geographies are one way in which gender disparities in physical activity are naturalised at the scale of the everyday exercise environment. Interventions for gender equity in physical activity would benefit from being empathetically attuned to the subtleties of place-based experiences. More widely, bringing emotions into geographies of physical activity sheds light on the larger question of the role of place in (re)producing gendered health inequities, with implications for geographical research on health and social justice. Future critical geographical inquiry is necessary to ensure that public health interventions are grounded in the experiential realities of practising physical activity in particular places

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

Agreement between proxy and adolescent assessment of disability, pain, and well-being in juvenile idiopathic arthritis.

OBJECTIVES: Adolescents with juvenile idiopathic arthritis have demonstrated substantial disagreement with their proxy's assessment of their disability, pain, and well-being. Our objective was to describe the clinical and psychological factors associated with discordance. STUDY DESIGN: This analysis included 204 proxy-adolescent (median age, 13 years) dyads that completed a Childhood Health Assessment Questionnaire for disability with 100-mm visual analogue scales for pain and well-being. Depressive symptoms in adolescents were measured by the Mood and Feelings Questionnaire and in proxies the General Health Questionnaire. Disagreement was assessed using Bland-Altman plots. Associations with discordance were identified using logistic regression analyses. RESULTS: There was higher agreement for disability (84%) than for pain (71%) and well-being (66%). Regression analyses found no association between age, sex, or disease duration and disagreement. However, relationships between disease activity and disagreement in outcomes were identified. Independent associations were found between increasing Mood and Feelings Questionnaire scores and disagreement in pain and well-being. CONCLUSIONS: Proxy and adolescent reports of pain and well-being are more likely to disagree in those with severe disease. Adolescents who report depressive symptoms are also more likely to disagree with their proxy. The reasons for these are multifactorial, and considerations of both reports are important when assessing outcomes in juvenile idiopathic arthritis

A national registry for juvenile dermatomyositis and other paediatric idiopathic inflammatory myopathies: 10 years' experience; the Juvenile Dermatomyositis National (UK and Ireland) Cohort Biomarker Study and Repository for Idiopathic Inflammatory Myopathies

Objectives: The paediatric idiopathic inflammatory myopathies (IIMs) are a group of rare chronic inflammatory disorders of childhood, affecting muscle, skin and other organs. There is a severe lack of evidence base for current treatment protocols in juvenile myositis. The rarity of these conditions means that multicentre collaboration is vital to facilitate studies of pathogenesis, treatment and disease outcomes. We have established a national registry and repository for childhood IIM, which aims to improve knowledge, facilitate research and clinical trials, and ultimately to improve outcomes for these patients. Methods: A UK-wide network of centres and research group was established to contribute to the study. Standardized patient assessment, data collection forms and sample protocols were agreed. The Biobank includes collection of peripheral blood mononuclear cells, serum, genomic DNA and biopsy material. An independent steering committee was established to oversee the use of data/samples. Centre training was provided for patient assessment, data collection and entry. Results: Ten years after inception, the study has recruited 285 children, of which 258 have JDM or juvenile PM; 86% of the cases have contributed the biological samples. Serial sampling linked directly to the clinical database makes this a highly valuable resource. The study has been a platform for 20 sub-studies and attracted considerable funding support. Assessment of children with myositis in contributing centres has changed through participation in this study. Conclusions: This establishment of a multicentre registry and Biobank has facilitated research and contributed to progress in the management of a complex group of rare muscloskeletal conditions

Quasi-stationary States of Two-Dimensional Electron Plasma Trapped in Magnetic Field

We have performed numerical simulations on a pure electron plasma system under a strong magnetic field, in order to examine quasi-stationary states that the system eventually evolves into. We use ring states as the initial states, changing the width, and find that the system evolves into a vortex crystal state from a thinner-ring state while a state with a single-peaked density distribution is obtained from a thicker-ring initial state. For those quasi-stationary states, density distribution and macroscopic observables are defined on the basis of a coarse-grained density field. We compare our results with experiments and some statistical theories, which include the Gibbs-Boltzmann statistics, Tsallis statistics, the fluid entropy theory, and the minimum enstrophy state. From some of those initial states, we obtain the quasi-stationary states which are close to the minimum enstrophy state, but we also find that the quasi-stationary states depend upon initial states, even if the initial states have the same energy and angular momentum, which means the ergodicity does not hold.Comment: 9 pages, 7 figure

Slow relaxation in the two dimensional electron plasma under the strong magnetic field

We study slow relaxation processes in the point vortex model for the two-dimensional pure electron plasma under the strong magnetic field. By numerical simulations, it is shown that, from an initial state, the system undergoes the fast relaxation to a quasi-stationary state, and then goes through the slow relaxation to reach a final state. From analysis of simulation data, we find (i) the time scale of the slow relaxation increases linearly to the number of electrons if it is measured by the unit of the bulk rotation time, (ii) during the slow relaxation process, each electron undergoes an superdiffusive motion, and (iii) the superdiffusive motion can be regarded as the Levy flight, whose step size distribution is of the power law. The time scale that each electron diffuses over the system size turns out to be much shorter than that of the slow relaxation, which suggests that the correlation among the superdiffusive trajectories is important in the slow relaxation process.Comment: 11pages, 19 figures. Submitted to J. Phys. Soc. Jp