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

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

Conceptualising fields of action for sustainable intensification A systematic literature review and application to regional case studies

[EN] After two decades of research on sustainable intensification (SI), namely securing food production on less environmental cost, heterogeneous understandings and perspectives prevail in a broad and partly fragmented scientific literature. Structuring and consolidating contributions to provide practice-oriented guidelines are lacking. The objectives of this study are to (1) comprehensively explore the academic SI literature, (2) propose an implementation-oriented conceptual framework, and (3) demonstrate its applicability for region-specific problem settings. In a systematic literature review of 349 papers covering the international literature of 20 years of SI research, we identified SI practices and analysed temporal, spatial and disciplinary trends and foci. Based on key SI practices, a conceptual framework was developed differentiating four fields of action from farm to regional and landscape scale and from land use to structural optimisation. Its applicability to derive region specific SI solutions was successfully tested through stakeholder processes in four European case studies. Disciplinary boundaries and the separation of the temporal and spatial strands in the literature prevent a holistic address of SI. This leads to the dominance of research describing SI practices in isolation, mainly on the farm scale. Coordinated actions on the regional scale and the coupling of multiple practices are comparatively un-derrepresented. Results from the case studies demonstrate that implementation is extremely context-sensitive and thus crucially depends on the situational knowledge of farmers and stakeholders. Although, there is no 'one size fits all' solution, practitioners in all regions identified the need for integrated solutions and common action to implement suitable SI strategies at the regional landscape level and in local ecosystems.This research was financially supported by the European Commission under grant agreement 652615 and conducted in the context of the ERA-Net FACCE SURPLUS project VITAL, with the national funders NWO (Netherlands), BMBF (Germany), INIA (Spain), ANR (France).Weltin, M.; Zasada, I.; Piorr, A.; Debolini, M.; Geniaux, G.; Moreno-Pérez, OM.; Scherer, L.... (2018). Conceptualising fields of action for sustainable intensification A systematic literature review and application to regional case studies. Agriculture Ecosystems & Environment. 257:68-80. https://doi.org/10.1016/j.agee.2018.01.023S688025

Comparing Presenting Clinical Features in 48 Children With Microscopic Polyangiitis to 183 Children Who Have Granulomatosis With Polyangiitis (Wegener's) : an ARChiVe Cohort Study

OBJECTIVE: To uniquely classify children with microscopic polyangiitis (MPA), to describe their demographic characteristics, presenting clinical features, and initial treatments in comparison to patients with granulomatosis with polyangiitis (Wegener's) (GPA). METHODS: The European Medicines Agency (EMA) classification algorithm was applied by computation to categorical data from patients recruited to the ARChiVe (A Registry for Childhood Vasculitis: e-entry) cohort, with the data censored to November 2015. The EMA algorithm was used to uniquely distinguish children with MPA from children with GPA, whose diagnoses had been classified according to both adult- and pediatric-specific criteria. Descriptive statistics were used for comparisons. RESULTS: In total, 231 of 440 patients (64% female) fulfilled the classification criteria for either MPA (n\u2009=\u200948) or GPA (n\u2009=\u2009183). The median time to diagnosis was 1.6 months in the MPA group and 2.1 months in the GPA group (ranging to 39 and 73 months, respectively). Patients with MPA were significantly younger than those with GPA (median age 11 years versus 14 years). Constitutional features were equally common between the groups. In patients with MPA compared to those with GPA, pulmonary manifestations were less frequent (44% versus 74%) and less severe (primarily, hemorrhage, requirement for supplemental oxygen, and pulmonary failure). Renal pathologic features were frequently found in both groups (75% of patients with MPA versus 83% of patients with GPA) but tended toward greater severity in those with MPA (primarily, nephrotic-range proteinuria, requirement for dialysis, and end-stage renal disease). Airway/eye involvement was absent among patients with MPA, because these GPA-defining features preclude a diagnosis of MPA within the EMA algorithm. Similar proportions of patients with MPA and those with GPA received combination therapy with corticosteroids plus cyclophosphamide (69% and 78%, respectively) or both drugs in combination with plasmapheresis (19% and 22%, respectively). Other treatments administered, ranging in decreasing frequency from 13% to 3%, were rituximab, methotrexate, azathioprine, and mycophenolate mofetil. CONCLUSION: Younger age at disease onset and, perhaps, both gastrointestinal manifestations and more severe kidney disease seem to characterize the clinical profile in children with MPA compared to those with GPA. Delay in diagnosis suggests that recognition of these systemic vasculitides is suboptimal. Compared with adults, initial treatment regimens in children were comparable, but the complete reversal of female-to-male disease prevalence ratios is a provocative finding

The Your Rheum story : involvement of young people in rheumatology research

Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature. However, the involvement of young people at all stages of health research, from priority setting through to dissemination, is widely advocated. Furthermore, such involvement is considered to be important ethically and, most important of all, has been called for by young people themselves. Young people have clear views about research and these views potentially enhance our understanding of how young people form opinions about research. These opinions in turn informs researchers how to best engage young people (including recruitment and retention) in research. Such involvement of young people ensures that research questions, project methodologies and/or interventions are truly resonant with their lives. This paper describes the development of a national youth advisory group in UK rheumatology, an important addition to the evolving evidence base to support the involvement of young people in rheumatology research. The paper is written with two young people who are members of this group, providing them with an opportunity to learn more about a key component of research—writing papers for publication

Quality of lamb meat from the Information Nucleus Flock

The effects of production and processing factors on tenderness, and colour of lamb meat produced from 7 locations as part of the Australian Sheep Industry CRC's Information Nucleus flock were investigated, using data from 2052 lambs slaughtered in 2007. At 24 h post-slaughter, samples of m. longissimus lumborum(LL) and m. semimembranosus (SM) were collected for measurement of intramuscular fat (IMF), myoglobin, iron and copper and fresh meat colour (L*, a*, b*) and pH at 24 h measured on the LL. pH and temperature measurements made pre-rigor were used to calculate the pH at 18 degrees C. Tenderness was measured by LL shear force at days 1 (SF1) and 5 (SF5) post-slaughter, the shear force difference (SF-diff) and SM compression and collagen concentration were determined. Retail colour stability was assessed using over-wrapped LL under simulated retail display for 3 days, according to the change in the oxymyoglobin/metmyoglobin ratio. All traits were affected by flock and date of slaughter (P < 0.001). After 4 days of ageing, 70-95% of the LL samples from all flocks, except for one, had acceptable tenderness for consumers based on their shear force. Low IMF, high LL pH at 18 degrees C and high pH at 24 h increased SF1 and SF5 and also had an effect on SF-diff (P<0.001). The retail colour of 44.8% of the samples on day 3 of retail display were lower than acceptable. Retail colour was influenced by IMF, pH18 and the concentration of iron and copper (P < 0.001). In conclusion, breeding and management practices that increase muscle IMF levels and reduce ultimate pH values and processing practices that result in moderate rates of pH fall post-slaughter, improve the tenderness of lamb. Extension of retail colour stability may be antagonistic to traits associated with tenderness and nutritional traits, particularly IMF and mineral levels

A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions

BACKGROUND:Most evidence about what works in transitional care comes from small studies in single clinical specialties. We tested the hypothesis that exposures to nine recommended features of transitional healthcare were associated with better outcomes for young people with long-term conditions during transition from child-centred to adult-oriented health services. METHODS:This is a longitudinal, observational cohort study in UK secondary care including 374 young people, aged 14-18.9 years at recruitment, with type 1 diabetes (n = 150), cerebral palsy (n = 106) or autism spectrum disorder with an associated mental health problem (n = 118). All were pre-transfer and without significant learning disability. We approached all young people attending five paediatric diabetes centres, all young people with autism spectrum disorder attending four mental health centres, and randomly selected young people from two population-based cerebral palsy registers. Participants received four home research visits, 1 year apart and 274 participants (73%) completed follow-up. Outcome measures were Warwick Edinburgh Mental Wellbeing Scale, Mind the Gap Scale (satisfaction with services), Rotterdam Transition Profile (Participation) and Autonomy in Appointments. RESULTS:Exposure to recommended features was 61% for 'coordinated team', 53% for 'age-banded clinic', 48% for 'holistic life-skills training', 42% for 'promotion of health self-efficacy', 40% for 'meeting the adult team before transfer', 34% for 'appropriate parent involvement' and less than 30% for 'written transition plan', 'key worker' and 'transition manager for clinical team'. Three features were strongly associated with improved outcomes. (1) 'Appropriate parent involvement', example association with Wellbeing (b = 4.5, 95% CI 2.0-7.0, p = 0.001); (2) 'Promotion of health self-efficacy', example association with Satisfaction with Services (b = - 0.5, 95% CI - 0.9 to - 0.2, p = 0.006); (3) 'Meeting the adult team before transfer', example associations with Participation (arranging services and aids) (odds ratio 5.2, 95% CI 2.1-12.8, p < 0.001) and with Autonomy in Appointments (average 1.7 points higher, 95% CI 0.8-2.6, p < 0.001). There was slightly less recruitment of participants from areas with greater socioeconomic deprivation, though not with respect to family composition. CONCLUSIONS:Three features of transitional care were associated with improved outcomes. Results are likely to be generalisable because participants had three very different conditions, attending services at many UK sites. Results are relevant for clinicians as well as for commissioners and managers of health services. The challenge of introducing these three features across child and adult healthcare services, and the effects of doing so, should be assessed.A. Colver, H. McConachie, A. Le Couteur, G. Dovey-Pearce, K. D. Mann, J. E. McDonagh ... et al. (On behalf of the Transition Collaborative Group