scholarly journals P28 Do we meet the needs of patients with non-inflammatory conditions referred to paediatric rheumatology?

Rheumatology ◽  
2019 ◽  
Vol 58 (Supplement_4) ◽  
Author(s):  
Sofi Berrisford ◽  
Isabel Carter ◽  
Valentina Leone ◽  
Marek Bohm
Keyword(s):  
Pain Management ◽  
Young People ◽  
Occupational Therapy ◽  
Conflicts Of Interest ◽  
Pain Syndrome ◽  
Holistic Approach ◽  
Paediatric Rheumatology ◽  
Initial Assessment ◽  
Children And Young People ◽  
Inflammatory Conditions

Poster presentation Tuesday 8 October Background Over one in four children and young people (CYP) present to paediatric rheumatology services with non-inflammatory conditions. However, there is a lack of evidence-based treatments and clinical guidelines supporting the management of these patients. Our project aims to determine whether CYP diagnosed with different non-inflammatory conditions and their families are satisfied with the service offered by the paediatric rheumatology department at Leeds General Infirmary. In addition, we wanted to assess which interventions they found most helpful and to check if there were differences between children and young people diagnosed with different non-inflammatory conditions. Methods 632 patients seen by Leeds paediatric rheumatology between July 2017 and June 2018 were diagnosed with non-inflammatory conditions; the three most common groups of conditions were symptomatic hypermobility (SH), chronic pain syndrome (CPS) and muscular back pain (MBP). We undertook a patient satisfaction survey, including patients reported assessment of their physical and psycho-social outcomes, focussing on these three groups only. 198 participants (80 SH; 74 CPS; 44 MBP) were invited to the study by sending them a postal questionnaire with self-addressed and stamped envelopes to return them. The questionnaire did not include any identifiable patient information but a different coloured paper was sent to patients with the three different groups of diagnoses to allow comparison of these groups. All had attended the paediatric rheumatology clinic for their initial assessment and had been referred on to appropriate management services as for the treating clinician including physiotherapy, occupational therapy, podiatry/orthotics, pain management, and/or psychology. Results A total of 33 filled questionnaires were received over the next 2 months including 4 (9.09%) from patients diagnosed with MBP, 11 (13.75%) from patients diagnosed with SH and 18 (24.32%) from patients diagnosed with CPS. Mann-Whitney-U calculations were performed to compare groups. The CPS patient group derived less benefit from physical therapies compared with non-CPS patients (U = 35.5, p = 0.0251) and that their reported mental health is worse than non-CPS patients (U = 31.5, p = 0.034). Within the CPS group, patients benefitted more from occupational therapy (U = 13.5, p = 0.01242) and pain management clinic (U = 9.5, p = 0.0226) than podiatry/orthotics services. When asked to rate their overall satisfaction out of 10, the median scores for the SH and MBP groups were 9 and 10 respectively, the median score for the CPS group was 5. Conclusion Our data would suggest that patients suffering with CPS would benefit from a more holistic approach including referrals to a psychologist, occupational therapy and the pain management team. The CPS group seemed most dissatisfied with the services provided by the clinic. The results of the project were fed back to the clinical team and we hope to repeat the survey in future after potential changes suggested by the survey have been implemented. Conflicts of Interest The authors declare no conflicts of interest.

O002. Factors facilitating the self- and shared-management of Juvenile Idiopathic Arthritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_5) ◽  
Author(s):  
Simon Stones
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Paediatric Rheumatology ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Realist Approach ◽  
Shared Management ◽  
Initial Question

Abstract Background Juvenile idiopathic arthritis (JIA) requires some form of lifelong management, with at least one third of children symptomatic in adulthood. Therefore, empowering children to competently self-manage their health and wellbeing across the lifecourse is logical, while supporting families in their shared-management role during childhood. However, there was a limited theoretical basis to the self- and shared-management of JIA across the lifecourse. The objective is to explore the factors facilitating the self- and shared-management of JIA using a realist approach to evaluation. Methods Guided by the Individual and Family Self-management Theory, a three-stage realist approach to evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from literature reviews and stakeholder insights [1]; 2) seven initial question theories were tested using teacher-learner cycle interviews with 20 participants; 3) findings were analysed using a theory-driven approach to thematic analysis, using deductive, inductive, and retroductive reasoning to extend or refute the initial question theories, in order to identify demi-regularities in the data. Results Six refined JIA self- and shared-management question theories emerged: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential. Conclusion There is an increasing recognition of the importance of self- and shared-management of JIA and other paediatric-onset chronic conditions. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and patient/parent organisations. The findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels, bearing relevance to individuals and organisations involved in caring for, and supporting children with JIA and their families.

Paediatric Rheumatology

2018 ◽  
Keyword(s):  
Young People ◽  
Clinical Skills ◽  
Connective Tissue Diseases ◽  
Bone Diseases ◽  
Paediatric Rheumatology ◽  
British Society ◽  
Haematopoietic Stem Cell ◽  
Metabolic Bone Diseases ◽  
Children And Young People ◽  
Rheumatological Diseases

Paediatric Rheumatology, second edition is an indispensable resource for the identification and management of rheumatological diseases of children and young people. As well as covering common and rare musculoskeletal problems, there are also chapters on rheumatological emergencies designed for quick reference, and essential core clinical skills of relevance to the full spectrum of paediatric rheumatological disease. This second edition is fully updated, including state-of-the-art descriptions of new autoinflammatory diseases, advances in genetics in paediatric rheumatology, up-to-date guidance on the treatment of JIA, vasculitis, SLE, JDM, and other connective tissue diseases. Highlights of the second edition include alignment of management approaches for paediatric rheumatological diseases with recent evidence-based / consensus European guidelines; a description of North American treatment approaches to JIA; updated chapters on more specialist interventions including immunization in the immunosuppressed, and haematopoietic stem cell transplantation; and sections describing approaches to the management of rheumatological diseases in developing countries. Bone diseases are also described in detail including CRMO, skeletal dysplasias, and metabolic bone diseases. The second edition also includes a colour plate depicting rashes presenting in paediatric rheumatological conditions. This second edition is fully endorsed by the British Society for Paediatric and Adolescent Rheumatology (BSPAR), and many members of BSPAR have contributed most of the chapters. This second edition thus provides fully updated clinical guidelines and supporting information needed to successfully manage children and young people with rheumatological conditions.

scholarly journals P61 An innovative multi-speciality clinic for patients with autoinflammatory conditions

Rheumatology ◽  
2019 ◽  
Vol 58 (Supplement_4) ◽  
Author(s):  
Pamela Dawson ◽  
Eslam Al-Abadi
Keyword(s):  
Rare Diseases ◽  
Transitional Care ◽  
Conflicts Of Interest ◽  
Periodic Fever ◽  
Paediatric Rheumatology ◽  
Initial Assessment ◽  
Complement Factor ◽  
Periodic Syndrome ◽  
Clinical Nurse ◽  
Clinical Nurse Specialists

Abstract Background Systemic autoinflammatory diseases (SAIDs) are rare, complex, and can often be debilitating. Establishing clinical and genetic diagnoses is equally complex and lengthy, causing significant stress to children and families. Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) recommendations emphasise the importance of access to genetic expertise alongside a tertiary paediatric rheumatology multidisciplinary team. Methods We established a 2-monthly combined clinic for children with diagnosed and suspected autoinflammatory conditions at Birmingham Children’s Hospital (BCH). These are run by a consultant paediatric rheumatologist with special interest in unexplained periodic fever syndromes and autoinflammatory disorders, in collaboration with a consultant clinical geneticist interested in genetic causes for autoinflammation. The BCH paediatric rheumatology department operates a truly multidisciplinary approach with a collocated team. This allows ease of access to clinical nurse specialists, physiotherapy and occupational therapy, as well as effective provision of transitional care, a dedicated research nurse and research coordinator. To avoid multiple appointments and delays in diagnosis, upon receiving referrals for possible SAIDs, a standardised letter along with fever diary, blood forms and instructions for examining clinicians is sent to patients and the referring clinician. In establishing fevers and fever-patterns, possible evidence of inflammation and exclusion of infection prior to initial assessment, the process is streamlined and appointments reduced. A multi-speciality assessment with paediatric rheumatology and genetics is conducted, collaborating with immunology and other appropriate specialists. If SAID is suspected, appropriate panel testing is arranged, followed by whole exome sequencing if results are inconclusive. Patients are also recruited to national and international research studies if relevant, including BCH Rare diseases centre Stars Together Registry & NIHR BioResource rare diseases studies. Results In the past 3 years, the service has seen 96 new patients. Current patients have a variety of diagnoses, including: cryopyrin-associated periodic syndrome (CAPS)(NLRP3 mutations), familial Mediterranean fever (FMF) , TNF receptor-associated periodic syndrome (TRAPS), PFAPA (Periodic Fever, Aphthous stomatitis, Pharyngitis, Adenitis), ADA2 mutation, NOD-2 mutation, Otulin-related autoinflammatory syndrome (ORAS), Aicardi-Goutieres syndrome (AGS), DNASE1L3 mutation, complement factor I deficiency, C2 deficiency, SLC29A3 mutation, Bechet’s disease and undifferentiated SAIDs. This does not include patients who have primary immunodeficiencies, non-inflammatory vasculopathies or other SAID mimics. Drug therapies include: NSAIDs, short-term corticosteroids, Colchicine, Infliximab, Tocilizumab, Methotrexate, Adalimumab, Mycophenolate mofetil (MMF), Ruxolitinib and Anakinra, all supported by clinical nurse specialists. Conclusion This cohesive service provides single-point access to multidisciplinary paediatric rheumatology and genetics, along with national and international high quality research. A unified approach avoids the need for multiple appointments, allowing prompter diagnosis, initiation of appropriate treatment, and potentially earlier disease control. This aims to prevent disease-related damage, working towards optimal support for families and improving quality of life. A dedicated multi-speciality clinic also provides excellent training opportunities, both between specialities and for junior trainees. Conflicts of Interest The authors declare no conflicts of interest.

scholarly journals P08 Beliefs about pain in juvenile idiopathic arthritis are significantly associated with higher reported pain and more negative affect in children and young people

Rheumatology ◽  
2019 ◽  
Vol 58 (Supplement_4) ◽  
Author(s):  
Rebecca Rachael Lee ◽  
Caitlin Grace Muckian ◽  
Sandeep Damaraju ◽  
Daniela Ghio ◽  
Wendy Thomson ◽  
...  
Keyword(s):  
Young People ◽  
Conflicts Of Interest ◽  
Well Being ◽  
Pain Severity ◽  
Children And Young People ◽  
Pain Beliefs ◽  
Pain Catastrophising ◽  
Pain Outcomes ◽  
Illness Outcomes

Abstract Background Persistent, unpredictable pain is one of the most burdensome features of juvenile idiopathic arthritis (JIA) which is a relapsing-remitting inflammatory musculoskeletal condition presenting in children and young people under 16 years. Recent research into perceptions of illness in young people has found that conceptualisations of long-term disease are mainly about the most salient features and symptoms, not of the illness as a whole. Particularly in young people with JIA, perceptions of pain are central to the individuals’ beliefs about the chronic condition. In paediatric pain research in general, the study of pain beliefs has mainly focused on pain catastrophising. Associations between other potentially important pain beliefs and pain outcomes (e.g. reporting pain or well-being) have not been explored to date. The aim of this study was to explore a wide range of pain perceptions in young people with JIA and to investigate whether these pain beliefs were associated with pain severity or well-being. Methods Cross-sectional data from the largest UK cohort study of children with JIA were analysed (the Childhood Arthritis Prospective Study- CAPS). Participants aged over 11 years completed ‘The Pain Perceptions Questionnaire for Young People (PPQ–YP)’ which assesses pain beliefs corresponding to the Common Sense-Self Regulatory framework first proposed by Leventhal and colleagues in the 1980s. Self-reported pain severity scores were captured using a Visual Analogue Scale (VAS). Emotional well-being was assessed using the Positive and Negative Affect Scale (PANAS). Associations were explored using Spearman’s Rank Correlation. Results 223 participants (64% female) completed the PPQ-YP. 38.2% of participants had a diagnosis of oligoarthritis, 29.6% had polyarthritis and equal proportions of participants had systemic, psoriatic or enthesitis related JIA (7.3%). Higher reported pain severity was significantly correlated with stronger beliefs about the greater impact of pain on life (rho=0.494, p < 0.001), pain unpredictability (rho=0.369, p < 0.001) and pain persistence (rho=0.278,p<0.001). Higher pain controllability beliefs (that pain was controllable) were significantly associated with lower self-reported pain severity (rho=-0.526, p < 0.001). Stronger beliefs about the impact of pain on life (rho=0.425,p=0.001) and pain coherence (poorer understanding about own pain: rho=-0.295,p=0.021) were significantly associated with more negative mood. Conclusion Pain beliefs (particularly about consequences, unpredictability, persistence and understanding) are linked to levels of pain severity and well-being in children with JIA. Adding to the evidence base on the link between pain catastrophising and illness outcomes, this research enhances our understanding of long-term illness and pain perceptions in young people through the implication of a wider range of pain beliefs and cognitions on illness outcomes. The PPQ-YP identified salient pain beliefs which should be considered in the design of potential interventions to improve pain outcomes in this group. Future research should aim to explore whether these perceptions can predict other important illness outcomes. Conflicts of Interest The authors declare no conflicts of interest.

scholarly journals O uso da Realidade Virtual como um recurso terapêutico ocupacional na reabilitação neurológica infanto-juvenil/The use of Virtual Reality as an occupational therapeutic resource in the neurological rehabilitation of children and adolescents

2018 ◽  
Vol 2 (2) ◽  
pp. 272-291
Author(s):  
Thaís De Freitas Bezerra ◽  
Vera Lucia Vieira de Souza
Keyword(s):  
Virtual Reality ◽  
Young People ◽  
Occupational Therapy ◽  
Children And Adolescents ◽  
User Interaction ◽  
Occupational Therapists ◽  
Quantitative Methodology ◽  
Neurological Rehabilitation ◽  
Online Questionnaire ◽  
Children And Young People

A Realidade Virtual - RV caracteriza-se como tecnologia tridimensional baseada em simulações virtuais para promover a interação do usuário com o jogo por meio de dispositivos associados ou não à utilização de controles remotos. Na reabilitação neurológica infanto-juvenil, a RV é utilizada por diversos profissionais, especialmente os terapeutas ocupacionais, com finalidade de desenvolver habilidades necessárias para a participação do indivíduo nas atividades do cotidiano. O presente estudo teve como objetivo identificar em que circunstâncias e de que forma os terapeutas ocupacionais brasileiros fazem uso da Realidade Virtual como um recurso terapêutico na reabilitação neurológica infanto-juvenil. Usou-se metodologia quali-quantitativa, por meio de um questionário online respondido por profissionais que atuavam na área no país. Nos resultados e discussão observou-se a participação de profissionais jovens do sexo feminino, predominantemente atuantes na região sudeste do país com uma população de crianças e jovens entre sete e dezoito anos com paralisia cerebral, especialmente. Foram apontados pelos participantes desse estudo, diversos objetivos e vantagens do uso da Realidade Virtual na reabilitação, demonstrando a versatilidade deste recurso. Porém algumas dificuldades foram sinalizadas, tais como, a adaptação dos dispositivos, a implantação do recurso nas instituições de reabilitação, o alto custo do recurso e a dificuldade de escolha dos jogos adequados. Concluiu-se que a Realidade Virtual é um potente recurso para a Terapia Ocupacional na reabilitação de crianças e jovens com injúrias neurológicas e é necessária maior divulgação nas instituições, capacitação de profissionais, estudos e publicação na área.AbstractVirtual Reality - VR is characterized as three-dimensional technology based on virtual simulations to promote user interaction with the game through devices associated or not with the use of remote controls. In the neurological rehabilitation of children and adolescents, VR is used by several professionals, especially occupational therapists, with the purpose of developing skills necessary for the individual's participation in everyday activities. The present study aimed to identify under what circumstances and in what way Brazilian occupational therapists make use of Virtual Reality as a therapeutic resource in the neurological rehabilitation of children and adolescents. A qualitative-quantitative methodology was used, through an online questionnaire answered by professionals who worked in the area in the country. In the results and discussion we observed the participation of young female professionals, predominantly active in the southeast region of the country with a population of children and young people between seven and eighteen years old with cerebral palsy, especially. It was pointed out by the participants of this study, several objectives and advantages of the use of Virtual Reality in rehabilitation, demonstrating the versatility of this resource. However, some difficulties were signaled, such as the adaptation of the devices, the implantation of the resource in the rehabilitation institutions, the high cost of the resource and the difficulty of choosing the appropriate games. It was concluded that Virtual Reality is a potent resource for Occupational Therapy in the rehabilitation of children and young people with neurological injuries and greater dissemination in institutions, professional qualification, studies and publication in the area is required.Keywords: Adolescent; Child; Neurological; Rehabilitation; Virtual Reality; Occupational Therapy.

scholarly journals Clinical guidelines and protocols

2018 ◽  
Author(s):  
Brogan Foster ◽  
Paul A. Brogan
Keyword(s):  
Young People ◽  
Clinical Guidelines ◽  
Paediatric Rheumatology ◽  
Children And Young People ◽  
Treatment Approaches ◽  
Rheumatic Conditions

This chapter provides updated guidance on treatment approaches and medications used in paediatric rheumatology. There are also new sections on international guidance for treatment of rheumatic conditions in children and young people.

scholarly journals Creating an Evidence Base to Support the Development of a Holistic Approach to Working with Children and Young People in Derbyshire: A Local Authority Case Study on the Integration of Social Pedagogy in Children and Young People’s Services

2014 ◽  
Author(s):  
Nicki Moore ◽  
Nicole Chavaudra ◽  
Mohammed Jakhara ◽  
John Marriott
Keyword(s):  
Young People ◽  
Workforce Development ◽  
Holistic Approach ◽  
Evidence Base ◽  
Children's Services ◽  
Ongoing Research ◽  
Children And Young People ◽  
Social Pedagogy ◽  
Children’S Services ◽  
Children In Care

Improving outcomes, particularly those relating to educational attainment for children in care, remains a ubiquitous challenge for local government. Some European countries use social pedagogy as a conceptual framework to improve the outcomes for children. As part of its aspiration to embed a holistic mind-set for staff and carers working with children, Derbyshire County Council has practiced social pedagogy within its children’s residential homes since 2010, resulting in positive changes for staff and young people. In 2013 the University of Derby was commissioned to scope the content of the Council’s workforce development approach, to explore the idea that social pedagogy is a promising approach, not just in children’s homes but also in wider services. The scoping project included surveys and interviews with a range of children’s services workers, including those from social work, child and family support, residential and fostering services. The research identified that, where social pedagogy underpins the activities offered to vulnerable children and those in residential care settings, the outcomes for these groups are improved. There is a growing appetite for a programme of workforce development in social pedagogy, however any such programme should be inclusive and offered at different levels. Furthermore, the principles and concepts should be embedded in the existing roles of a range of practitioners working with children and young people. Ongoing research with Derbyshire’s children’s services workforce will contribute to a growing body of evidence, which supports the development and application of social pedagogy to improve the experiences of children and young people in the county.

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