Are we there yet?:An update on transitional care in rheumatology

Abstract Significant progress has been made in the understanding of transitional care in rheumatology over the last few decades, yet universal implementation has not been realised and unmet needs continue to be reported. Possible explanations for this include lack of evidence as to which model is most effective; lack of attention to the multiple dimensions, stakeholders and systems involved in health transitions; and lack of consideration of the developmental appropriateness of transition interventions and the services/organisations/systems where such interventions are delivered. Successful transition has major implications to both the young people with juvenile-onset rheumatic disease and their families. Future research in this area will need to reflect both the multidimensional (biopsychosocial) and the multisystemic (multiple systems and stakeholders across personal/social/family support networks and health/social care/education systems). Only then will we be able to determine which aspects of transition readiness and service components influence which dimension. It is therefore imperative we continue to research and develop this area, involving both paediatric and adult rheumatology clinicians and researchers, remembering to look beyond both the condition and our discipline. Neither should we forget to tap into the exciting potential associated with digital technology to ensure further advances in transitional care are brought about in and beyond rheumatology

P50 addressing the vocational development of young people with long-term health conditions in health care settings:a systematic review and mixed methods synthesis

INTRODUCTION/BACKGROUND: Long term health conditions (LTHC) such as rheumatic conditions have significant impact on the biopsychosocial development of young people (YP) including vocational development. Educational transitions are prominent during adolescence and young adulthood yet not all transitional care programmes in rheumatology address this area [1]. The aim of this study was to identify and synthesise the benefits and experiences of addressing the vocational development of YP with LTHC in health care settings. DESCRIPTION/METHOD: A mixed methods synthesis approach [2] was employed. We systematically searched 10 bibliographic databases. Restrictions were applied on publication date (1996-2020) and publication language (English). Articles reporting quantitative and/or qualitative primary research on addressing vocational needs/issues of YP with LTHC in health care settings were included. YP was defined as 10-24 years [3]. Two reviewers independently screened records using predetermined inclusion/exclusion criteria [4]. Quality appraisal was undertaken following study selection. Qualitative data were synthesised thematically. Quantitative data were synthesised narratively, given that a pooled synthesis was not considered appropriate. A cross-study synthesis integrated findings from both the qualitative and quantitative syntheses. DISCUSSION/RESULTS: 43 articles were included. The quality of qualitative evidence was good; however, the quality of quantitative evidence was poor. The thematic synthesis of stakeholders’ perspectives (n = 23 qualitative studies) resulted in seven recommendations for interventions: provide skills training; provide psychological support; offer to liaise with key stakeholders in educational/workplace settings; provide specialist career advice; provide information, signposting and facilitate access to supporting services; provide/facilitate access to social support; provide flexible care and optimal disease management to support education/employment transitions. The narrative synthesis summarised the results of 17 interventions. The cross-study synthesis mapped interventions against the set of recommendations arising from stakeholders’ perspectives: four interventions met five recommendations; two interventions met four recommendations; five interventions met three recommendations; six interventions met two recommendations. Transitional care interventions were the type of intervention that most comprehensively met the recommendations. The way in which interventions addressed vocational issues was not always clear, with some interventions addressing them directly and others indirectly. No interventions had vocational issues as the core, defining component of the intervention. KEY LEARNING POINTS/CONCLUSION: Existing stakeholder evidence highlights that vocational development is an important area to address in the care of YP with LTHC such as rheumatic diseases. The resulting set of recommendations provides guidance for future research in this area and transitional care developments in rheumatology. Further work in this area should address these aspects to enable better quality evidence and ensure consistency. References [1] Clemente D et al. Pediatr Rheumatol Online J. 2017 Jun 9;15(1):49. [2] Kavanagh, J et al Synthesizing Qualitative Research: Choosing the Right Approach. Wiley-Blackwell, Chichester, UK, pp. 113–136 [3] World Health Organization, 2001. The second decade: improving adolescent health and development. Geneva. [4] Farre A et al. PROSPERO 2016 CRD42016051359

Can we normalise developmentally appropriate health care for young people in UK hospital settings? An ethnographic study

OBJECTIVE: The WHO has argued that adolescent-responsive health systems are required. Developmentally appropriate healthcare (DAH) for young people is one approach that could underpin this move. The aim of this study was to explore the potential for DAH to become normalised, to become a routine, taken-for-granted, element of clinical practice. DESIGN: Qualitative ethnographic study. Analyses were based on procedures from first-generation grounded theory and theoretically informed by normalisation process theory. SETTING: Two tertiary and one secondary care hospital in England. PARTICIPANTS: 192 participants, health professionals (n=121) and managers (n=71) were recruited between June 2013 and January 2015. Approximately 1600 hours of non-participant observations in clinics, wards and meeting rooms were conducted, alongside 65 formal qualitative interviews. RESULTS: We observed diverse values and commitments towards the care of young people and provision of DAH, including a distributed network of young person-orientated practitioners. Informal networks of trust existed, where specific people, teams or wards were understood to have the right skill-mix, or mindset, or access to resources, to work effectively with young people. As young people move through an organisation, the preference is to direct them to other young person-orientated practitioners, so inequities in skills and experience can be self-sustaining. At two sites, initiatives around adolescent and young adult training remained mostly within these informal networks of trust. At another, through support by wider management, we observed a programme that sought to make the young people's healthcare visible across the organisation, and to get people to reappraise values and commitment. CONCLUSION: To move towards normalisation of DAH within an organisation, we cannot solely rely on informal networks and cultures of young person-orientated training, practice and mutual referral and support. Organisation-wide strategies and training are needed, to enable better integration and consistency of health services for all young people

New food composition data on selected ethnic foods consumed in Europe

Background: Reliable data on the composition of foods is needed to better understand individual diets, measure nutrient intakes and provide nutritional guidance for improving the health of the populations. Ethnic foods are becoming increasingly popular among all European consumers, and are the main source of nutrients in the diets of ethnic groups. However, there is limited information on the nutrient composition of ethnic foods in Europe. The objective of this study therefore was to generate new and reliable data on ethnic foods using harmonised methods for chemical analyses. Methods: New data on 128 ethnic foods were generated for inclusion in the national databases within the European Food Information Resource Network of Excellence through participants from France, Israel, Spain, Denmark, Italy, The Netherlands, Belgium and the United Kingdom. In each selected country, the list of prioritised foods and key nutrients, methods of analyses and quality assurance procedure were harmonised. Results: This paper presents the nutrient composition of 40 ethnic foods consumed in Europe. The nutrient composition of the foods varied widely because of the nature and variety of foods analysed, with energy content (kcal) ranging between 24 (biteku-teku, Blegium) and 495 (nachos, Italy) per 100 g of edible food. Polyunsaturated and monounsaturated fatty acids were generally higher in most ethnic foods consumed in Italy and Spain compared with ethnic foods of other countries. Conclusions: The new data were scrutinised and fully documented for inclusion in the national food composition databases. The data will aid effective diet and disease interventions, and enhance the provision of dietary advice, in all European consumers

New food composition data on selected ethnic foods consumed in Europe

Background: Reliable data on the composition of foods is needed to better understand individual diets, measure nutrient intakes and provide nutritional guidance for improving the health of the populations. Ethnic foods are becoming increasingly popular among all European consumers, and are the main source of nutrients in the diets of ethnic groups. However, there is limited information on the nutrient composition of ethnic foods in Europe. The objective of this study therefore was to generate new and reliable data on ethnic foods using harmonised methods for chemical analyses. Methods: New data on 128 ethnic foods were generated for inclusion in the national databases within the European Food Information Resource Network of Excellence through participants from France, Israel, Spain, Denmark, Italy, The Netherlands, Belgium and the United Kingdom. In each selected country, the list of prioritised foods and key nutrients, methods of analyses and quality assurance procedure were harmonised. Results: This paper presents the nutrient composition of 40 ethnic foods consumed in Europe. The nutrient composition of the foods varied widely because of the nature and variety of foods analysed, with energy content (kcal) ranging between 24 (biteku-teku, Blegium) and 495 (nachos, Italy) per 100 g of edible food. Polyunsaturated and monounsaturated fatty acids were generally higher in most ethnic foods consumed in Italy and Spain compared with ethnic foods of other countries. Conclusions: The new data were scrutinised and fully documented for inclusion in the national food composition databases. The data will aid effective diet and disease interventions, and enhance the provision of dietary advice, in all European consumers

Deciphering the biotic and climatic factors that influence floral scents : a systematic review of floral volatile emissions

Altres ajuts: Catalan Government grant FI-2013Currently, a global analysis of the information available on the relative composition of the floral scents of a very diverse variety of plant species is missing. Such analysis may reveal general patterns on the distribution and dominance of the volatile compounds that form these mixtures, and may also allow measuring the effects of factors such as the phylogeny, pollination vectors, and climatic conditions on the floral scents of the species. To fill this gap, we compiled published data on the relative compositions and emission rates of volatile organic compounds (VOCs) in the floral scents of 305 plant species from 66 families. We also gathered information on the groups of pollinators that visited the flowers and the climatic conditions in the areas of distribution of these species. This information allowed us to characterize the occurrence and relative abundances of individual volatiles in floral scents and the effects of biotic and climatic factors on floral scent. The monoterpenes trans-β-ocimene and linalool and the benzenoid benzaldehyde were the most abundant floral VOCs, in both ubiquity and predominance in the floral blends. Floral VOC richness and relative composition were moderately preserved traits across the phylogeny. The reliance on different pollinator groups and the climate also had important effects on floral VOC richness, composition, and emission rates of the species. Our results support the hypothesis that key compounds or compounds originating from specific biosynthetic pathways mediate the attraction of the main pollinators. Our results also indicate a prevalence of monoterpenes in the floral blends of plants that grow in drier conditions, which could link with the fact that monoterpene emissions protect plants against oxidative stresses throughout drought periods and their emissions are enhanced under moderate drought stress. Sesquiterpenes, in turn, were positively correlated with mean annual temperature, supporting that sesquiterpene emissions are dominated mainly by ambient temperature. This study is the first to quantitatively summarise data on floral-scent emissions and provides new insights into the biotic and climatic factors that influence floral scents

miR-542 promotes mitochondrial dysfunction and SMAD activity and is raised in ICU Acquired Weakness

Rationale: Loss of skeletal muscle mass and function is a common consequence of critical illness and a range of chronic diseases but the mechanisms by which this occurs are unclear. Objectives: We aimed to identify miRNAs that were increased in the quadriceps of patients with muscle wasting and to determine the molecular pathways by which they contributed to muscle dysfunction. Methods: miR-542-3p/-5p were quantified in the quadriceps of patients with COPD and intensive care unit acquired weakness (ICUAW). The effect of miR-542-3p/5p was determined on mitochondrial function and TGF-β signaling in vitro and in vivo. Measurements and main results: miR-542-3p/5p were elevated in patients with COPD but more markedly in patients with ICUAW. In vitro, miR-542-3p suppressed the expression of the mitochondrial ribosomal protein MRPS10, and reduced 12S rRNA expression suggesting mitochondrial ribosomal stress. miR-542-5p increased nuclear phospho-SMAD2/3 and suppressed expression of SMAD7, SMURF1 and PPP2CA, proteins that inhibit or reduce SMAD2/3 phosphorylation suggesting that miR-542-5p increased TGF-β signaling. In mice, miR-542 over-expression caused muscle wasting, reduced mitochondrial function, 12S rRNA expression and SMAD7 expression, consistent with the effects of the miRNAs in vitro. Similarly, in patients with ICUAW, the expression of 12S rRNA and of the inhibitors of SMAD2/3 phosphorylation were reduced, indicative of mitochondrial ribosomal stress and increased TGF-β signaling. In patients undergoing aortic surgery, pre-operative levels of miR-542-3p/5p were positively correlated with muscle loss following surgery. Conclusion; Elevated miR-542-3p/5p may cause muscle atrophy in ICU patients through the promotion of mitochondrial dysfunction and activation of SMAD2/3 phosphorylation

Health professionals' and managers' definitions of developmentally appropriate healthcare for young people:Conceptual dimensions and embedded controversies

Objectives: We aimed to (i) explore how health professionals and managers who work with young people seek to define developmentally appropriate healthcare (DAH), (ii) identify the range of conceptual dimensions present in their definitions and (iii) explore the controversies embedded in their characterisations of DAH. Methods: A qualitative multisite ethnographic study was conducted across three hospitals in England. We undertook face-to-face semi-structured interviews with health professionals and managers; and non-participant observation in clinics, wards and meetings. Anonymised field notes and interview transcripts were analysed using thematic analysis. The theme conceptualisations of DAH' was then further analysed, and the resulting themes categorised to form conceptual dimensions. Results: We recruited 192 participants and conducted 65 interviews (41 with health professionals and 24 with managers) and approximately 1600 hours of non-participant observations (involving 103 health professionals and 72 managers). Despite the wide range of definitions provided by participants, five conceptual dimensions of DAH were identified: (i) biopsychosocial development and holistic care, (ii) acknowledgement of young people as a distinct group, (iii) adjustment of care as the young person develops, (iv) empowerment of the young person by embedding health education and health promotion and (v) interdisciplinary and interorganisational work. Also, some controversies were identified within most dimensions. Conclusions: This study illustrates the lack of a generalised definition of DAH for young people among UK health professionals and managers, and presents a set of five core dimensions that can inform future research to help define and evaluate DAH for young people