scholarly journals O31 Trajectories of anxiety in children young people and adults with rheumatic diseases in the wake of COVID-19: results from the COVID-19 European patient registry

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Stephanie J W Shoop-Worrall ◽  
Suzanne M M Verstappen ◽  
Wendy Costello ◽  
Saskya P Angevare ◽  
Yosef Uziel ◽  
...  
Keyword(s):  
Young People ◽  
Rheumatic Diseases ◽  
Model Fit ◽  
Patient Registry ◽  
Linear Quadratic ◽  
High Anxiety ◽  
Children And Young People ◽  
Chi Squared ◽  
The Uk ◽  
Cubic Polynomials

Abstract Background/Aims  Younger and older people with rheumatic diseases may experience increased anxiety during the COVID-19 pandemic, due to the uncertainty regarding their likelihood of contracting the virus, its complications alongside their existing condition and whether their immunosuppressive treatments pose additional risks. This study explored trajectories of anxiety in parents of children and young people (CYP) with rheumatic diseases and adults with rheumatic diseases in the six months following March 2020 during the COVID-19 pandemic. Methods  CYP and adults recruited to the international COVID-19 European Patient Registry, a parent-led, online, self-referred prospective cohort recruiting participants globally, were selected if enrolled within 20th March to 17th April 2020. Anxiety scores (0-10, 10=Highest anxiety) were collected weekly for up to 28 weeks and denoted parent anxiety in the CYP cohort and self-reported anxiety in the adult cohort. Group-based trajectory models explored anxiety clusters using censored-normal models in the CYP and adult populations, separately. Linear, quadratic and cubic polynomials were tested within 1 to 10 clusters and optimal models selected based on a combination of model fit (BIC), parsimony and clinical plausibility. Demographic (country, age, gender) and clinical (diagnosis, disease control, respiratory comorbidity, immunosuppressive therapy) information and COVID-19 mitigation behaviours (isolation, distancing, none) were collected at initial enrolment and compared between clusters using Chi-squared, Fisher’s exact and Kruskal-Wallis tests. Results  Among 498 CYP and 2640 adults, most were female (65%, 89%) and from the UK (50%, 84%), respectively. The most common diagnoses were polyarticular JIA (37%) and oligoarticular JIA (29%) among CYP and RA among the adults (63%). Respiratory comorbidities were uncommon in the CYP (10%) and adult (17%) cohorts, and most were taking any immunosuppressive therapies (85%, 87%), respectively. As of March 2020, 88% and 79% were self-isolating, respectively. In both the parents of CYP and adult cohorts, four trajectory clusters were identified with similar patterns: Persistent extremely high anxiety (32%, 17%), persistent high anxiety (43%, 41%), high anxiety that marginally improved (25%, 32%) and moderate anxiety that improved (11%, 10%). Among CYP, few characteristics distinguished the clusters. However, in the adult cohort, clusters with greater and more persistent anxiety were associated with higher levels of respiratory comorbidities, higher use of immunosuppressive therapies, higher initial levels of self-isolation and slightly older age than those with lower or improving anxiety over time. Conclusion  This study reports four trajectories of anxiety during the COVID-19 pandemic that are consistent across parents of CYP with rheumatic diseases and among adults with these conditions. Despite relatively lower risks for CYP, parental anxiety regarding COVID-19 was high and not associated with characteristics of their child or of their child's disease. Among adults with rheumatic diseases, greater anxiety was associated with risk factors potentially associated with COVID-19 morbidity and mortality. Disclosure  S.J.W. Shoop-Worrall: None. S.M.M. Verstappen: None. W. Costello: None. S.P. Angevare: None. Y. Uziel: None. C. Wouters: None. N. Wulffraat: Honoraria; Sobi. Grants/research support; Abbvie. R. Beesley: None.

scholarly journals AB0681 HOW COMMON IS COVID-19 IN CHILDREN, YOUNG PEOPLE AND ADULTS WITH RHEUMATIC DISEASES? RESULTS FROM THE INTERNATIONAL COVID-19 EUROPEAN PATIENT REGISTRY

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1373.2-1374
Author(s):  
S. Shoop-Worrall ◽  
S. Verstappen ◽  
W. Costello ◽  
S. Angevare ◽  
Y. Uziel ◽  
...  
Keyword(s):  
Young People ◽  
Rheumatic Disease ◽  
Rheumatic Diseases ◽  
Lifestyle Factors ◽  
Patient Registry ◽  
Community Factors ◽  
Social Distancing ◽  
Increased Risk ◽  
The Uk

Background:People with rheumatic diseases may be at increased risk of contracting COVID-19 due to their rheumatic disease or immunosuppressive treatments. It is currently unclear what the COVID-19 disease burden is for these people and whether any of their personal or disease characteristics are associated with contracting COVID-19.Objectives:To explore the proportion of, and characteristics associated with, contracting COVID-19 in children and young people (CYP) with rheumatic diseases and adults with rheumatic diseases from March 2020 to December 2020 during the COVID-19 pandemic.Methods:CYP and adults recruited to the international COVID-19 European Patient Registry, a parent-led, online, self-referred prospective cohort recruiting participants from around the globe, were included in current study if enrolled between 20th March 2020 and 30th December 2020. Demographic information was collected at enrolment and rheumatic disease, diagnoses of COVID-19 and lifestyle factors were collected at weekly intervals.The proportion of CYP and adults diagnosed with COVID-19 were assessed separately. Associations between contraction of COVID-19 at any point over follow-up and participant demographics, rheumatic disease and lifestyle factors at enrolment were assessed descriptively and via Mann-Whitney U-tests, Chi-squared tests and Fisher’s exact tests.Results:Within 642 CYP and 3646 adults, the majority were female (67%, 89%) and most commonly from the UK (43%, 82%), respectively. The most frequent diagnoses were polyarticular JIA (37%) in the CYP cohort and RA in the adults (63%). Comorbidities were common (45%, 61%) and the majority were taking one or more immunosuppressive therapies (88%, 92%), respectively. At the time of enrolment, 51% and 54% were practising social distancing, respectively.In both cohorts ~3% contracted COVID-19 at some point during follow-up (n=18 (2.8%) in CYP and n=103 (2.8%) in the adult cohort).In CYP, those who contracted COVID-19 were older (no COVID, median: 10, IQR: 7, 13, vs COVID, median: 14, IQR: 12, 16, p<0.001) and less often had oligoarticular JIA (no COVID: 31%, COVID: 22%) or polyarticular JIA (No COVID: 38%, COVID: 11%). Systemic JIA (no COVID: 7%, COVID: 11%) and enthesitis-related JIA (no COVID: 5%, COVID: 22%) were more common in those who contracted COVID. No other differences between those with and without COVID-19 were observed with respect to country of residence (p=0.335), gender (p=0.624), control of rheumatic disease (p=0.459), comorbidities (p=0.752), immunosuppressive medication (p=0.713) or social distancing (p=0.729).In the adult cohort, those contracting COVID-19 were more commonly from Russia (no COVID: 2%, COVID: 14%) and less commonly from the UK (no COVID: 82%, COVID: 71%, p<0.001). There was greater female representation in those that contracted COVID-19 (no COVID: 88%, COVID: 93%, p=0.022). Although there were no differences in overall presence of comorbidity (p=0.923), kidney disease was overrepresented in those that had contracted COVID-19 (no COVID: 2%, COVID: 8%, p<0.001). Finally, there were lower levels of social distancing in those who contracted COVID (no COVID: 54%, COVID: 44%, p=0.047). There were no significant differences in age (p=0.203), BMI (p=0.617), smoking status (p=0.120), rheumatic disease (p=0.181) and its control (p=0.218) or immunosuppressive use (p=0.208) between those who did and did not contract COVID-19 in the adult cohort.Conclusion:A low proportion of CYP and adults with rheumatic diseases contracted COVID-19 in the 9 months since March 2020. However, given the self-reported nature of the survey and limited testing available across many countries, this study may underestimate the true burden of COVID-19 in the rheumatic disease community. Factors associated with COVID-19 differ between CYP and adults, with age and type of rheumatic disease associated in CYP and gender, kidney comorbidity and social distancing associated in adults.Acknowledgements:The authors thank all of the participants and families involved in the international COVID-19 European Patient Registry, as well as administrators. We also thank the team of volunteers who helped translate the surveys. We also thank ENCA, PRES and representatives from the international rheumatology community for their expertise and support.Disclosure of Interests:Stephanie Shoop-Worrall: None declared, Suzanne Verstappen: None declared, Wendy Costello: None declared, Saskya Angevare: None declared, Yosef Uziel: None declared, Carine Wouters: None declared, Nico Wulffraat Speakers bureau: Sobi, Grant/research support from: AbbVie, Richard Beesley: None declared

scholarly journals Collateral impact of COVID-19: why should children continue to suffer?

2021 ◽  
Author(s):  
Prasad Nagakumar ◽  
Ceri-Louise Chadwick ◽  
Andrew Bush ◽  
Atul Gupta
Keyword(s):  
Young People ◽  
Large Scale ◽  
Hospital Admissions ◽  
Severe Disease ◽  
Children And Young People ◽  
Collateral Effects ◽  
Rsv Infection ◽  
Syncytial Virus ◽  
Set Up ◽  
The Uk

AbstractThe COVID-19 pandemic caused by SARS-COV-2 virus fortunately resulted in few children suffering from severe disease. However, the collateral effects on the COVID-19 pandemic appear to have had significant detrimental effects on children affected and young people. There are also some positive impacts in the form of reduced prevalence of viral bronchiolitis. The new strain of SARS-COV-2 identified recently in the UK appears to have increased transmissibility to children. However, there are no large vaccine trials set up in children to evaluate safety and efficacy. In this short communication, we review the collateral effects of COVID-19 pandemic in children and young people. We highlight the need for urgent strategies to mitigate the risks to children due to the COVID-19 pandemic. What is Known:• Children and young people account for <2% of all COVID-19 hospital admissions• The collateral impact of COVID-19 pandemic on children and young people is devastating• Significant reduction in influenza and respiratory syncytial virus (RSV) infection in the southern hemisphere What is New:• The public health measures to reduce COVID-19 infection may have also resulted in near elimination of influenza and RSV infections across the globe• A COVID-19 vaccine has been licensed for adults. However, large scale vaccine studies are yet to be initiated although there is emerging evidence of the new SARS-COV-2 strain spreading more rapidly though young people.• Children and young people continue to bear the collateral effects of COVID-19 pandemic

scholarly journals Unexpected deaths of children and young people in the UK

2016 ◽  
Vol 40 (2) ◽  
pp. 68-71 ◽  
Author(s):  
Paul Stallard ◽  
Michelle Maguire ◽  
Justin Daddow ◽  
Rosie Shepperd ◽  
Mike Foster ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Health Services ◽  
Young People ◽  
Health Services ◽  
Child Death ◽  
National Data ◽  
Children And Young People ◽  
National Health Service Trust ◽  
Incident Reports ◽  
The Uk

Aims and methodTo review the deaths of children and young people who took their own life. We conducted a retrospective analysis of serious incident reports from a National Health Service trust and reviews by the child death overview panels of the local safeguarding children boards.ResultsWe identified 23 deaths, with annual rates varying considerably between local authorities and over time. Over half of the children (n = 13, 56%) were not known to specialist child and adolescent mental health services, with 11 having no contact with any agency at the time of their death. Hanging was the most common method (n = 20, 87%) and of these, half (n =11, 55%) were low-level hangings.Clinical implicationsTraining is required to improve awareness, recognition and the assessment of children at risk of taking their own life. Specialist child mental health services should directly assess plans or attempts at hanging and offer advice about the seriousness of attempting this. National data (by age) on children and young people who take their own life should be routinely published to inform clinical and preventive services.

Thinking about ethnicity and gender diversity in children and young people

2018 ◽  
Vol 24 (2) ◽  
pp. 291-303 ◽  
Author(s):  
Nastasja M de Graaf ◽  
Ilham I Manjra ◽  
Anna Hames ◽  
Claudia Zitz
Keyword(s):  
Young People ◽  
Identity Development ◽  
Gender Identity ◽  
Gender Diversity ◽  
Age Groups ◽  
Chi Square ◽  
Children And Young People ◽  
And Gender ◽  
The Uk ◽  
Ethnicity Data

Background: Little is known about how social and cultural variants interact with gender identity development. This article aims to identify the ethnicities of children and young people referred to the United Kingdom’s national Gender Identity Development Service (GIDS), and compare the ethnicity data with the UK child population and referrals to Child and Adolescent Mental Health Services (CAMHS). Methods: GIDS referrals made between April 2012 and April 2015 for children and young people were retrieved. Ethnicity data were obtained by the ‘16 + 1’ ethnicity list. Chi-square and t-tests were performed on the demographics. Results: Less than 10% of the 995 referrals at GIDS were from Black and minority ethnic (BME) groups – an underrepresentation as compared with both the national population and CAMHS figures. No significant differences in ethnic representation were found between the demographic birth-assigned sexes, across age groups, or year of referral. Conclusions: Hypotheses proposed for this underrepresentation take into account both the potential barriers to accessing services and the possibility of cross-cultural variations in the conceptualisations of gender, gender roles and gender diversity. Ethnicity, culture and religion, and their overlapping relationship with gender need further exploration.

scholarly journals The nature of music itself, and the knowledge versus skills debate in music education

2016 ◽  
Vol 33 (2) ◽  
pp. 129-132 ◽  
Author(s):  
MARTIN FAUTLEY ◽  
REGINA MURPHY
Keyword(s):  
Young People ◽  
Music Education ◽  
Children And Young People ◽  
The Arts ◽  
The World ◽  
The Uk ◽  
Music And The Arts

Back in 2013, in the BJME editorial for issue 30(2), we considered the place of knowledge in the curriculum (Fautley & Murphy, 2013). Things have not stood still since that date, certainly in England, and other parts of the world too. What we have now is a situation where the idea of knowledge as assuming supremacy over skills is on the increase. For those of us concerned with music education, many aspects of this increasingly fractious debate are to be viewed with concern. Allied to this, we have neoliberal-leaning governments in many parts of the world, Britain included, who seem to find it difficult to understand the important role that music education has – or should have – in the education of our children and young people. Indeed, in the UK, the education secretary is on record as making this observation: Education secretary Nicky Morgan has warned young people that choosing to study arts subjects at school could ‘hold them back for the rest of their lives’ (The Stage, 2014) This attitude, and Britain is certainly not alone in this, is clearly going to be problematic for those of us involved in music and the arts.

Introduction

2020 ◽  
pp. 1-18
Author(s):  
Elaine Chase ◽  
Jennifer Allsopp
Keyword(s):  
Young People ◽  
Social Care ◽  
Immigration Policies ◽  
Children And Young People ◽  
Unaccompanied Children ◽  
Youth Migration ◽  
The Uk ◽  
The Impact ◽  
Over Time

This introductory chapter provides an overview of youth migration. Youth migration needs to be understood in relation to its negative drivers of persecution, violence, and unsustainable lives in countries of origin, factors that motivated the flights of many young people. But at the same time, there is a need to recognize that such adversity also fuels individual and collective dreams and aspirations for better lives. Without acknowledging this, politicians will struggle to formulate meaningful and workable asylum and immigration policies. The chapter then briefly outlines the differing journeys that young people took in order to arrive in Europe. The chapter explains that the book focuses on how asylum, immigration, and social care procedures are operationalized once unaccompanied children and young people arrive in the UK and Italy, and the impact that these bureaucratic processes have on them over time.

Introduction: the landscapes of poverty and education across the UK

2020 ◽  
pp. 1-10
Author(s):  
Ian Thompson ◽  
Gabrielle Ivinson
Keyword(s):  
Young People ◽  
Educational Inequality ◽  
Well Being ◽  
Children And Young People ◽  
The United Kingdom ◽  
Context Specific ◽  
Social And Cultural Factors ◽  
The Uk ◽  
Different Parts

Poverty blights the lives of children and young people. Research has consistently shown that the most economically disadvantaged pupils across the United Kingdom (UK) have the poorest educational outcomes and that poverty has a pernicious effect on children’s well-being. However, far less is known about the ways that poverty is differentially experienced for children and young people in schools within the four jurisdictions of the UK. Are there historical, social and cultural factors that make poverty a postcode lottery in terms of quality of schooling in the different parts of the UK? Are successful local interventions context specific as the research evidence seems to suggest or can we learn from particular regions or cities? This introduction points out that anxieties about growing educational inequality in the UK have to be contextualised historically, geographically and in terms of the distinct political and socio-economic landscapes in England, Scotland, Wales and Northern Ireland.

scholarly journals P09 A survey of the NPPG group concerning medication administration problems among children and young people aged 0 to 18 years old

2020 ◽  
Vol 105 (9) ◽  
pp. e10.2-e11
Author(s):  
Dania Dahmash ◽  
Chi Huynh ◽  
Daniel Kirby ◽  
David Terry
Keyword(s):  
Young People ◽  
Healthcare Professionals ◽  
Medication Use ◽  
Medication Administration ◽  
Main Concern ◽  
Age Group ◽  
Further Training ◽  
Children And Young People ◽  
Paediatric Patients ◽  
The Uk

AimTo identify issues encountered by pharmacy healthcare professionals with regards to problems that they have experienced, complaints received, queries and feedback by the patients or parents or caregivers in terms of medication administration for children and young people aged 0 to18 years old.MethodAn online survey using the Online Surveys tool was devised to obtain healthcare professionals’ perspective regarding medication administration problems encountered by parents, caregivers or paediatric patients when administering or taking their medication at home. The survey was sent to the members of the Neonatal and Paediatric Pharmacists Group (NPPG), who represent different geographical areas within the UK and further afield. Informed consent was obtained from participants. This study was reviewed and approved by the Life and Health Sciences Ethics Committee, Aston University.Results37 pharmacists and 1 technician completed the survey. The majority of the respondents 23/38 were currently practicing in England, with 6/38 respondents being registered pharmacists outside the UK, 1/38 was practicing in Northern Ireland, 3/38 within Scotland and 4/38 were practicing in Wales. 71.1% of the respondents strongly agreed that parents or caregivers require further training when it comes to medication delivery to their children. In addition, when asked about their concerns regarding prescribed medication to children aged between 0 to18 years old, respondents expressed a different level of concern regarding each age group. Regarding neonates, the main concern was the suitability of the prescribed formulation and the ability of the parents to accurately measure and administered a low dose volume. In contrast, for children aged between 28 days to 12 years, the common concerns were associated with palatability, which will further reflect upon child compliance and the parent or caregiver’s ability to understand medication instructions and administration. Finally, for older aged children, adherence was a common concern. Furthermore, liquid formulations (suspensions (60.5%), solutions (55.3%) and injections (44.7%)) were predominantly used among children aged 0 to 18 years old within both in and outpatients setting. Overall, the majority of the respondents expressed that counselling time between the patient and pharmacists and the need to provide further training and educational material to parents and young people is an important issue to improve understating in regards medication use.ConclusionThe findings suggest that medication administration problems occur frequently among paediatric patients, and the nature of these problems varies among each age group. Medication training for both parents and young people could be a key factor to help reduce this problem. Future research is needed to investigate and gain insight into personal experiences with medication use and administration from a parent and/or young person’s perspective. This will help to highlight the current problem in the UK and further develop potential interventions to reduce medication administration errors by parents of children aged 0 to 16 years old and by young people up to the age of 18 years.

scholarly journals O6 Bridging an information gap: development of drug specific factsheets for children and young people with cancer

2019 ◽  
Vol 104 (7) ◽  
pp. e2.56-e2
Author(s):  
Anna Kinsella ◽  
J Delaney ◽  
◽  
Keyword(s):  
Young People ◽  
Information Needs ◽  
Drug Information ◽  
Paediatric Oncology ◽  
Oral Chemotherapy ◽  
Children And Young People ◽  
Chemotherapy Drugs ◽  
Patient Information Leaflets ◽  
Information Leaflets ◽  
The Uk

AimPatient information leaflets (PILs) have been a legal requirement in the UK for all medicines for almost 20 years. However, as many of the drugs used in children with cancer are unlicensed or used outside the terms of their licence ‘off- label’, information provided by the manufacturer does not always tell parents/patients everything they need to know about the use of the medicine in children and young people. In 2014, a survey conducted by the Children’s Cancer and Leukaemia Group (CCLG) revealed 92% of parents wanted more drug specific information. The aim of this piece of work was to address these information needs through the development of standardised drug specific factsheets for children and young people with cancer.MethodsInformation was collated on the availability of paediatric drug specific PIL’s at primary treatment centres (PTC’s) in the UK and Ireland. The CLLG and members of the Paediatric Oncology Pharmacists (POP) group worked together in reviewing and comparing a selection of PIL’s already available, in addition to agreeing a standardised format and outline of headings for proposed factsheets. Drafts were produced for 10 of the most common oral chemotherapy drugs used in children. These were reviewed for content, language, punctuation, grammar and structure by a wide range of end users, such as parents of children on treatment, parents of children whose treatment had finished, clinical nurse educators, paediatric oncology/haematology consultants, clinical nurse specialists, ward managers and different members of the POP group. Feedback and comments were collated. Proposed changes suggested were either actioned or reasons for not actioning documented on a change log. This process repeated until a final version was agreed.ResultsOf the 12 PTC’s, 5 had their own oral chemotherapy PIL’s, with the range of leaflets available varying across these five centres. Only 1 PTC had their own intravenous (IV) chemotherapy PIL’s. Information provided varied from centre to centre with drug information also provided from treatment protocols, the Macmillan website or from the manufacturers summary of product characteristics (SPC). Factsheets for the following oral chemotherapy drugs have been produced; chlorambucil, cyclophosphamide, dexamethasone, etoposide, imatinib, lomustine, mercaptopurine, methotrexate, procarbazine and temozolomide. A factsheet on the ‘safe handling of oral chemotherapy’ was developed alongside these to further support parents in managing their child’s oral chemotherapy safely at home.ConclusionUser engagement is paramount in producing information that is clear, accurate, up-to-date, easy to understand and practical. Factsheets are available to order/download free of charge providing equal access to all healthcare professionals, parents/carers and patients across the UK and Ireland, ensuring families are not disadvantaged by geographical treatment location. Current multimedia technology offers the benefit of increased and fast access to information; however, a further survey of families is required to establish whether parents drug information needs have been met though the availability of these factsheets.ReferencesStandardised IV chemotherapy factsheets and additional oral drug factsheets for dasatanib, hydroxycarbamide and isotretinoin are currently in development. MHRA Medicines and Healthcare Products Regulatory Authority (2012) Best practice guidance on patient information leaflets [Online]. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/328405/Best_practice_guidance_on_patient_information_leaflets.pdf (accessed 12 Jun 2018)Shinfield, C. Chief Information Officer. Children’s Cancer and Leukaemia Group. Personal communication. 25thNovember 2015

scholarly journals Children and Young People's Improving Access to Psychological Therapies: inspiring innovation or more of the same?

2015 ◽  
Vol 39 (2) ◽  
pp. 57-60 ◽  
Author(s):  
Sami Timimi
Keyword(s):  
Mental Health ◽  
Mental Health Services ◽  
Young People ◽  
Health Services ◽  
Mental Health Problems ◽  
Children And Young People ◽  
Psychological Therapies ◽  
Common Mental Health Problems ◽  
Uk Government ◽  
The Uk

SummaryIn 2007 the UK Government announced a substantial expansion of funding for psychological therapies for those presenting with common mental health problems. This ‘Improving Access to Psychological Therapies’ (IAPT) project was widely welcomed, however, evidence backed, economic, and conceptual critiques were voiced from the start and the project remains controversial. In 2011, the UK government announced it was extending the IAPT project to encompass services for children and young people with the aim of ‘transforming’ the way mental health services are delivered to them. Here I critically reflect on the problems associated first with IAPT and then with CYP-IAPT and ponder whether CYP-IAPT is significantly different to the problematic adult IAPT project or more of the same.

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