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

An iceberg I can’t handle: a qualitative inquiry on perceptions towards paediatric rheumatology among healthcare workers in Kenya

Background: Delay in diagnosis and access to specialist care is a major problem for many children and young people with rheumatic disease in sub-Saharan Africa. Most children with symptoms of rheumatic disease present to nonspecialists for care. There is an urgent need to understand and scale-up paediatric rheumatology knowledge and skills amongst non-specialist healthcare workers to promote early diagnosis, prompt referral, and management. Purpose: We evaluated the knowledge, attitudes and practices towards diagnosis and care of paediatric rheumatology patients among health care workers in Kenya. Methods: We conducted 12 focus group discussions with clinical officers (third-tier community health workers) nurses, general practitioners and paediatricians across 6 regions in Kenya. Interviews were conducted on zoom, audio-recorded, transcribed, and analysed using NVIVO software. Results: A total of 68 individuals participated; 11 clinical officers, 12 nurses, 10 general practitioners, 27 paediatricians and 7 others. Most (n = 53) were female, and the median age was 36 years (range 31–40 years). Fifty per cent of the participants (34 of 68) worked in public health facilities. Our study revealed gaps in knowledge of paediatric rheumatology amongst healthcare workers which contributes to delayed diagnosis and poor management. Healthcare workers reported both positive and negative attitudes towards diagnosis and care of paediatric rheumatology patients. Perceived complexity and lack of knowledge in diagnosis, management and lack of health system clinical pathways made all cadres of healthcare workers feel helpless, frustrated, inadequate and incompetent to manage paediatric rheumatology patients. Positive attitudes arose from a perceived feeling that paediatric rheumatology patients pose unique challenges and learning opportunities. Conclusion: There is an urgent need to educate healthcare workers and improve health systems to optimize clinical care for paediatric rheumatology patients

A critical evaluation of systematic reviews assessing the effect of chronic physical activity on academic achievement, cognition and the brain in children and adolescents: A systematic review

Background. International and national committees have started to evaluate the evidence for the effects of physical activity on neurocognitive health in childhood and adolescence to inform policy. Despite an increasing body of evidence, such reports have shown mixed conclusions. We aimed to critically evaluate and synthesise the evidence for the effects of chronic physical activity on academic achievement, cognitive performance and the brain in children and adolescents in order to guide future research and inform policy. Methods. MedLine, Embase, PsycINFO, Cochrane Library, Web of Science, and ERIC electronic databases were searched from inception to February 6th, 2019. Articles were considered eligible for inclusion if they were systematic reviews with or without meta-analysis, published in peer-reviewed (English) journals. Reviews had to be on school-aged children and/or adolescents that reported on the effects of chronic physical activity or exercise interventions, with cognitive markers, academic achievement or brain markers as outcomes. Reviews were selected independently by two authors and data were extracted using a pre-designed data extraction template. The quality of reviews was assessed using AMSTAR-2 criteria. Results. Of 908 retrieved, non-duplicated articles, 19 systematic reviews met inclusion criteria. One high-quality review reported inconsistent evidence for physical activity-related effects on cognitive- and academic performance in obese or overweight children and adolescents. Eighteen (critically) low-quality reviews presented mixed favourable and null effects, with meta-analyses showing small effect sizes (0.1–0.3) and high heterogeneity. Low-quality reviews suggested physical activity-related brain changes, but lacked an interpretation of these findings. Systematic reviews varied widely in their evidence synthesis, rarely took intervention characteristics (e.g. dose), intervention fidelity or study quality into account and suspected publication bias. Reviews consistently reported that there is a lack of high-quality studies, of studies that include brain imaging outcomes, and of studies that include adolescents or are conducted in South American and African countries. Conclusions. Inconsistent evidence exists for chronic physical activity-related effects on cognitive-, academic-, and brain outcomes. The field needs to refocus its efforts towards improving study quality, transparency of reporting and dissemination, and is urged to differentiate between intervention characteristics for its findings to have a meaningful impact on policy

‘Snakes & Ladders’: factors influencing access to appropriate care for children and young people with suspected juvenile idiopathic arthritis – a qualitative study

Background: Many children and young people with Juvenile Idiopathic Arthritis (JIA) experience delay in diagnosis and access to right care. The reasons for delay are multi-factorial and influenced by patient and family, clinician and organisational factors. Our aim was to explore the experiences of care, from initial symptoms to initial referral to paediatric rheumatology. Methods: We analysed one-to-one and joint qualitative interviews with families of children with JIA (n=36) presenting to a regional paediatric rheumatology service in the UK. We interviewed 51 family members (including mothers, fathers, patients, grandmothers and an aunt) and 10 health professionals (including orthopaedic surgeons, paediatricians, paediatric immunologist, General Practitioner and nurse) and a teacher involved in the care pathway of these JIA patients. Interviews were audio-recorded and analysed according to the standard procedures of rigorous qualitative analysis - coding, constant comparison, memoing and deviant case analysis. Results: The median age of the children was 6 years old (range 1-17), with a spread of JIA subtypes. The median reported time to first PRh MDT visit from symptom onset was 22 weeks (range 4-364 weeks). Three key factors emerged in the pathways to appropriate care: i) the persistence of symptoms (e.g ‘change’ such as limp or avoidance of previously enjoyed activities); ii) the persistence of parents help-seeking actions (e.g repeat visits to primary and hospital care with concern that their child is not ‘normal’; iii) the experience and skills of health professionals resulting in different trajectories (e.g no-real-concern-at-this-point or further-investigation-is-required). JIA was more likely to be considered amongst health practitioner if they had prior experiences of a child with JIA (moreso with a ‘protracted pathway’) or exposure to paediatric rheumatology in their training. Conversely JIA was more likely to be overlooked if the child had comorbidity such as learning disability or a chronic illness. Conclusions: Care pathways are often ‘turbulent’ prior to a diagnosis of JIA with physical and emotional distress for families. There is need for greater awareness about JIA amongst health care professionals and observations of change (from family and non-health care professionals such as teachers) are key to trigger referral for paediatric rheumatology opinion

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

Screening utility and acceptability of the Kiswahili-pGALS (paediatric Gait, Arms, Legs, Spine) at a tertiary referral hospital in Kenya-A diagnostic accuracy study

Background: Paediatric rheumatic diseases cause considerable disease burden to children and their families (Moorthy LN, Peterson MGE, Hassett AL, et al, Pediatric Rheumatology 8:20, 2010). Delayed diagnosis is a significant determinant of severity and mortality attributed to these conditions (Foster HE, Eltringham MS, Kay LJ, et al, Arthritis Care Res 57(6):921-7, 2007). pGALS is a simple clinical tool used to assess joints and identify musculoskeletal (MSK) conditions in school-going children to enable early referral to paediatric rheumatologists. Objectives: This study aimed to translate and determine the diagnostic accuracy and acceptability of a Kiswahili version of the pGALS screening tool among Kiswahili-speaking children. Methods: The pGALS screening questions were translated into Kiswahili according to the World Health Organisation (WHO) standard for translation of a tool. The validity of the Kiswahili PGALS was ascertained and acceptability rated (time taken, discomfort). Using systematic random sampling, we enrolled children aged 5–16 years presenting at the Aga Khan University Hospital’s (AKUH) emergency department in Kenya, who spoke Kiswahili and had symptoms suggestive of an MSK condition. Those already under follow-up at the paediatric rheumatology service at AKUH were excluded. MSK assessment was undertaken by two resident doctors using the newly translated Kiswahili-pGALS and findings were compared with a paediatric rheumatologist examination (‘gold-standard’) on the same day, and who was blinded to the pGALS findings. We analysed demographic details of the participants and determined the diagnostic accuracy by cross tabulation of the index test results by the results of the reference standard. Results: One hundred children with a median age of nine years (IQR 7–11) were enrolled. The sensitivity and specificity of the Kiswahili-pGALS screening tool were 76.8% (95%CI 63.6–87.0%) and 40.0% (95%CI 23.9–57.9%), respectively. The diagnostic accuracy was 62.7% (95%CI 52.1–72.1%), area under the ROC was 0.58 (95%CI 0.48–0.68). The median time to perform the Kiswahili-pGALS was 5.0 min (IQR 3.5–6.0 min). Ninety percent of the guardians found the practice of Kiswahili-pGALS to have none, or only some discomfort. Conclusions: The Kiswahili-pGALS’s was found to be a useful screening tool to aid early identification of MSK conditions in Kiswahili-speaking settings. However, the low specificity implies that relatively large number of false positives would still need to be reviewed by a rheumatologist if the tool is adapted for use

The COMPLETE Survey of Star-Forming Regions: Phase I Data

We present an overview of data available for the Ophiuchus and Perseus molecular clouds from ``Phase I'' of the COMPLETE Survey of Star-Forming Regions. This survey provides a range of data complementary to the Spitzer Legacy Program ``From Molecular Cores to Planet Forming Disks.'' Phase I includes: Extinction maps derived from 2MASS near-infrared data using the NICER algorithm; extinction and temperature maps derived from IRAS 60 and 100um emission; HI maps of atomic gas; 12CO and 13CO maps of molecular gas; and submillimetre continuum images of emission from dust in dense cores. Not unexpectedly, the morphology of the regions appears quite different depending on the column-density tracer which is used, with IRAS tracing mainly warmer dust and CO being biased by chemical, excitation and optical depth effects. Histograms of column-density distribution are presented, showing that extinction as derived from 2MASS/NICER gives the closest match to a log-normal distribution as is predicted by numerical simulations. All the data presented in this paper, and links to more detailed publications on their implications are publically available at the COMPLETE website.Comment: Accepted by AJ. Full resolution version available from: http://www.cfa.harvard.edu/COMPLETE/papers/complete_phase1.pd

Developmentally appropriate transitional care during the Covid-19 pandemic for young people with juvenile-onset rheumatic and musculoskeletal diseases: the rationale for a position statement

From Springer Nature via Jisc Publications RouterHistory: received 2021-03-26, accepted 2021-06-06, registration 2021-07-31, pub-electronic 2021-08-25, online 2021-08-25, collection 2021-12Publication status: PublishedAbstract: Background: The importance of developmentally appropriate transitional care in young people with juvenile-onset rheumatic and musculoskeletal disease is well recognised. The Paediatric Rheumatology European Society (PReS) / European League Against Rheumatism (EULAR) Taskforce has developed international recommendations and standards for transitional care and a growing evidence base supports the positive benefits of such care. However, there is also evidence that universal implementation has yet to be realised. In 2020, against this background the COVID-19 pandemic arrived with significant impact on all our lives, young and old, patient, public and professional alike. The unfortunate reality of the pandemic with potential for unfavourable outcomes on healthcare provision during transition was acknowledged by the PReS working groups in a position statement to support healthcare professionals, young people and their caregivers. Aim: The aim of this review is to present the literature which provides the rationale for the recommendations in the PReS Position Statement. Summary: The following areas are specifically addressed: the prime importance of care coordination; the impact of the pandemic on the various aspects of the transition process; the importance of ensuring continuity of medication supply; the pros and cons of telemedicine with young people; ensuring meaningful involvement of young people in service development and the importance of core adolescent health practices such as routine developmental assessment psychosocial screening and appropriate parental involvement during transitional care