Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 92
Filter
1.
Disabil Rehabil ; : 1-12, 2024 Apr 09.
Article in English | MEDLINE | ID: mdl-38591714

ABSTRACT

PURPOSE: To characterise existing knowledge about the design and learning outcomes of education and training programs for supported or shared decision making. MATERIALS AND METHODS: A scoping review was performed to identify academic and grey literature, published between January 2006 and February 2022, that reported on the design and/or learning outcomes of supported or shared decision making education or training programs. Eligible literature was mapped across domains of educational design and Kirkpatrick's hierarchy of learning effectiveness, and then qualitatively synthesised using cross-case analysis. RESULTS: A total of 33 articles were identified (n = 7 for supported decision making and n = 26 for shared decision making) that provided education or training to supporters of persons with mental illness or substance use disorders (n = 14), dementia or neurocognitive disorders (n = 6), cognitive disability (n = 5), mixed populations (n = 1), and those receiving end-of-life care (n = 7). In their design, most programs sought specific changes in practice (behaviour) via experiential learning. Reported educational outcomes also focused on supporter behaviour, with limited evidence for how changes in learner attitudes, skills, or knowledge might be contributing to changes in supporter behaviour. CONCLUSIONS: Future education and training would benefit from a closer engagement with theories of teaching and learning, particularly those oriented towards co-design.


Existing education and training programs for supported and shared decision making have a solid focus on modifying supporter behaviour through information provision, reflective practice, and modelling and coaching desired behaviour.To fully realise supported decision making, education and training programs would benefit from a focus on program co-design and working within a socio-ecological model of supported decision making.Future evaluations of supported decision making education should draw from both quantitative and qualitative approaches, with a focus on identifying the learning processes through which education influences supporter behaviour, organisational practices, and client/patient outcomes.

2.
Mov Disord Clin Pract ; 11(6): 716-719, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38533626

ABSTRACT

BACKGROUND: This case series highlights the connection between childhood intense imagery movements (IIM) and adult-reported maladaptive daydreaming (MD). Motor stereotypies occur in typically developing children and also with co-occurring neurodevelopmental differences. A subgroup with complex motor stereotypies reports accompanying intense imagery, often enhanced by the movements. This phenomenon can persist into adulthood and, in some cases, will need active management to prevent significant distress and impairment. CASES: Six adults, self-reporting maladaptive daydreaming associated with stereotypies, are presented to demonstrate the associations. LITERATURE REVIEW: The clinical significance and function of IIM and MD are unclear, but several hypotheses are discussed, including the mechanism of emotional regulation through sensory seeking, as a process for processing childhood psychological trauma, as intrusive thoughts or images as part of a subtype of Obsessive Compulsive Disorder, or as a result of diverse attentional networks seen in neurodevelopmental disorders. CONCLUSIONS: This paper highlights important connections between IIM and MD. Many adults with MD show a childhood origin of stereotypical movements. Whilst immersive daydreaming may provide creativity and emotional regulation, there is evidence of distress and impairment of function for some adults, leading to MD diagnoses. Recognizing this phenomenon is important for all neurologists and physicians working with stereotypical movements.


Subject(s)
Imagination , Adult , Female , Humans , Male , Middle Aged , Fantasy , Imagination/physiology , Movement , Obsessive-Compulsive Disorder/psychology , Obsessive-Compulsive Disorder/physiopathology , Adolescent , Young Adult
3.
Int J Mol Sci ; 25(3)2024 Jan 25.
Article in English | MEDLINE | ID: mdl-38338749

ABSTRACT

Mitral valve prolapse (MVP) is a common valvular disease, affecting 2-3% of the adult human population and is a degenerative condition. A total of 5-10% of the afflicted will develop severe mitral regurgitation, cardiac dysfunction, congestive heart failure, and sudden cardiac death. Naturally occurring myxomatous MVP in dogs closely resembles MVP in humans structurally, and functional consequences are similar. In both species, valvular interstitial cells (VICs) in affected valves exhibit phenotype consistent with activated myofibroblasts with increased alpha-smooth muscle actin (αSMA) expression. Using VICs collected from normal and MVP-affected valves of dogs, we analyzed the miRNA expression profile of the cells and their associated small extracellular vesicles (sEV) using RNA sequencing to understand the role of non-coding RNAs and sEV in MVP pathogenesis. miR-145 was shown to be upregulated in both the affected VICs and sEV, and overexpression of miR-145 by mimic transfection in quiescent VIC recapitulates the activated myofibroblastic phenotype. Concurrently, KLF4 expression was noted to be suppressed by miR-145, confirming the miR-145-KLF4-αSMA axis. Targeting this axis may serve as a potential therapy in controlling pathologic abnormalities found in MVP valves.


Subject(s)
Aortic Valve Stenosis , Kruppel-Like Factor 4 , MicroRNAs , Mitral Valve Prolapse , Adult , Animals , Dogs , Humans , Aortic Valve/pathology , Cells, Cultured , MicroRNAs/genetics , Mitral Valve Prolapse/metabolism , Mitral Valve Prolapse/pathology , Actins/metabolism , Kruppel-Like Factor 4/metabolism
4.
PLoS One ; 19(1): e0292742, 2024.
Article in English | MEDLINE | ID: mdl-38166108

ABSTRACT

OBJECTIVE: This is the first study to systematically explore the lived experiences of sudden and new onset of severe functional tics from the perspective of the mother's experiences and describes their attempts to access support services in the United Kingdom. METHOD: Twenty-One mothers of young people aged between 12 to 17 years with functional tic-like behaviour (FTLB) took part in semi-structured interviews. Thematic analysis of the transcribed interviews revealed gaps and inconsistencies within the process of gaining access to professional services and a lack of support for the management of tics and functional tic-like movements, in addition to highlighting the impact it had on daily family life. RESULTS: The themes generated included the occurrence and development of tics, the severity and intensity of symptoms, the psychological impact on the family and the need to make recommendations for a clear care pathway. Managing the impact of the FTLB and co-occurring conditions such as suicidal ideation and self-harm, as well as the physical and emotional trauma, commonly contributed to feelings of isolation and helplessness, which impacted negatively on the family's ability to function and participate in society. CONCLUSIONS: The findings emphasize the urgent need to create a clear management pathway for those experiencing FTLB, including the need for more professionals with relevant knowledge, to improve the dialogue with families during the referral process, whilst prioritising the treatment of anxiety and other identified mental health concerns.


Subject(s)
Tic Disorders , Tics , Child , Female , Humans , Adolescent , Mothers , Anxiety/therapy , Anxiety/psychology , Emotions
5.
PLoS One ; 18(5): e0284970, 2023.
Article in English | MEDLINE | ID: mdl-37195937

ABSTRACT

Child labour is the most common form of child abuse in the world today, with almost half of child workers employed in hazardous industries. The large-scale employment of children during the rapid industrialisation of the late 18th and early 19th centuries in England is well documented. During this period, the removal of pauper children from workhouses in cities to work as apprentices in rural mills in the North of England was commonplace. Whilst the experiences of some of these children have been recorded historically, this study provides the first direct evidence of their lives through bioarchaeological analysis. The excavation of a rural churchyard cemetery in the village of Fewston, North Yorkshire, yielded the skeletal remains of 154 individuals, including an unusually large proportion of children aged between 8 to 20 years. A multi-method approach was undertaken, including osteological and palaeopathological examination, stable isotope and amelogenin peptide analysis. The bioarchaeological results were integrated with historical data regarding a local textile mill in operation during the 18th-19th centuries. The results for the children were compared to those obtained from contemporaneous individuals of known identity (from coffin plates) of comparable date. Most of the children exhibited distinctive 'non-local' isotope signatures and a diet low in animal protein when compared to the named local individuals. These children also showed severe growth delays and pathological lesions indicative of early life adversity, as well as respiratory disease, which is a known occupational hazard of mill work. This study has provided unique insights into the harrowing lives of these children; born into poverty and forced to work long hours in dangerous conditions. This analysis provides a stark testimony of the impacts of industrial labour on the health, growth and mortality risk of children, with implications for the present as well as our understanding of the past.


Subject(s)
Child Labor , Humans , History, 19th Century , England , Industry/history , Isotopes , Poverty
6.
PLoS One ; 18(3): e0282859, 2023.
Article in English | MEDLINE | ID: mdl-36928870

ABSTRACT

Chemotherapy-induced impairment of autophagy is implicated in cardiac toxicity induced by anti-cancer drugs. Imperfect translation from rodent models and lack of in vitro models of toxicity has limited investigation of autophagic flux dysregulation, preventing design of novel cardioprotective strategies based on autophagy control. Development of an adult heart tissue culture technique from a translational model will improve investigation of cardiac toxicity. We aimed to optimize a canine cardiac slice culture system for exploration of cancer therapy impact on intact cardiac tissue, creating a translatable model that maintains autophagy in culture and is amenable to autophagy modulation. Canine cardiac tissue slices (350 µm) were generated from left ventricular free wall collected from euthanized client-owned dogs (n = 7) free of cardiovascular disease at the Foster Hospital for Small Animals at Tufts University. Cell viability and apoptosis were quantified with MTT assay and TUNEL staining. Cardiac slices were challenged with doxorubicin and an autophagy activator (rapamycin) or inhibitor (chloroquine). Autophagic flux components (LC3, p62) were quantified by western blot. Cardiac slices retained high cell viability for >7 days in culture and basal levels of autophagic markers remained unchanged. Doxorubicin treatment resulted in perturbation of the autophagic flux and cell death, while rapamycin co-treatment restored normal autophagic flux and maintained cell survival. We developed an adult canine cardiac slice culture system appropriate for studying the effects of autophagic flux that may be applicable to drug toxicity evaluations.


Subject(s)
Cardiotoxicity , Myocytes, Cardiac , Animals , Dogs , Myocytes, Cardiac/metabolism , Cardiotoxicity/metabolism , Autophagy , Doxorubicin/pharmacology , Doxorubicin/metabolism , Sirolimus/pharmacology
7.
J Fam Violence ; : 1-14, 2023 Jan 28.
Article in English | MEDLINE | ID: mdl-36743687

ABSTRACT

Purpose: The perspectives of children and young people with disability who experience domestic and family violence are under-researched, impeding the development of approaches that meet their needs. Knowledge gaps stem from the layered discursive positioning of disability, childhood/youth, or domestic and family violence in addition to the methodological, ethical and pragmatic complexity of research needed to understand their priorities and be attuned to their lived experience. This article explores methodological, ethical and practical challenges to centring their voices in research about domestic and family violence. Method: A conceptual framework of feminist disability theory and intersectionality informed our co-designed research, across three phases: (1) quantitative large-scale data linkage and case file analysis; (2) qualitative research with children and young people, their families and service providers and (3) stakeholder engagement workshops. Results: We reflect on how our research was able to prioritise the contextual agency of children and young people with disability, ways it could not, and other constraints. Conclusion: Children and young people with disability experiencing domestic and family violence hold an expert and unique vantage point on what happens to them. Amplifying their priorities for directing policy and organisational change requires more of researchers in terms of methods, but also more flexibility in how projects are funded to enable creativity and innovation. We call for collective attention to frameworks for supported decision-making and child ethics to progress inclusive research which recognises the importance of participation for children and young people with disability.

8.
Disabil Rehabil ; 45(6): 1038-1045, 2023 03.
Article in English | MEDLINE | ID: mdl-35312446

ABSTRACT

PURPOSE: This study explored the experiences of people with acquired brain injury and their families during the COVID-19 pandemic, focusing on how they maintained their communities and sense of belonging, the strategies they found helpful, and advice they have for improving service provision and community connectedness. METHODS: Semi structured interviews with pictorial mapping were conducted with ten adults with ABI and six of their family members. Participants responded to recruitment information circulated by a state-wide ABI peer support network in South Australia. RESULTS: Four primary themes were identified from the findings: (1) disruptions to routine; (2) social isolation; (3) using technology; and (4) strategies for staying safe and keeping well. Results are discussed using a social and urban geography lens and a conceptual framework of belonging to explore the experiences of people with ABI and their communities. CONCLUSIONS: The study reinforces the role of robust peer/support networks to stay connected, stay well and support others. Government, health services and community groups must provide clear and accessible information and supports, and regularly reach out to ensure the safety and wellbeing of people with ABI and their families during the pandemic.IMPLICATIONS FOR REHABILITATIONPeople with acquired brain injury and their families experienced increased challenges to maintaining contact with their communities during the COVID-19 pandemic.The main challenges were disruptions to routine, social isolation, and use of technology for health, therapy and social contact.Strategies to support people with ABI to maintain connections, stay engaged, and access technology and information to stay safe and well during lock-down are presented.


Subject(s)
Brain Injuries , COVID-19 , Adult , Humans , Pandemics , Communicable Disease Control , Family , Brain Injuries/epidemiology
9.
Res Involv Engagem ; 8(1): 71, 2022 Dec 07.
Article in English | MEDLINE | ID: mdl-36476374

ABSTRACT

BACKGROUND: Research codesign is generally defined as end-users' involvement in planning, implementation, and evaluation of projects. Recently, there has been a growing interest in codesign to maximise research acceptability, applicability, and impact and to address longstanding issues around power and depth of involvement. Frameworks have been developed to assist in understanding research codesign processes at a project level. However, little is known about how university based researchers construct or adopt a coherent approach to sustain research codesign in governance, methodological approaches, and practice. This study investigated the perspectives of researchers within a newly formed research institute about principles and practices of research codesign in the context of their previous and current projects. We also investigated their perceptions of institution-level enablers and barriers to codesign. University based researchers are our primary focus here and we intend to consult other stakeholders in future work. METHODS: Using an interview guide informed by exploratory work and a scoping review of the literature, we conducted 15 individual interviews with Caring Futures Institute (CFI) leaders and researchers at different career stages working across multiple areas of health, care, and social research. Qualitative thematic analysis was conducted. RESULTS: The researchers we interviewed were involved in projects ranging from large nationally funded projects to small studies funded by the university or PhD projects. Research codesign activities were generally part of larger researcher-led projects but there were a few examples of community-led projects. There was agreement amongst participants on the principles and perceived benefits of research codesign such as partnership, co-learning, and power sharing. Less agreement was found regarding the definition of research codesign and best terminology to be used. Themes reflecting the success of research codesign included pre-existing community relationships, communication skills, knowledge, and training on codesign, balancing power relationships, use of external facilitators, and adequacy of funding, time, and resources. CONCLUSIONS: The study reaffirmed the complexity of research codesign from researchers' perspectives and identified areas of potential action that may be beneficial for university based research institutions in building codesign skills, capacity and culture for example training, peer learning and funding support. Implications for practice improvement centre on a dual strategy of building practical capacity in researchers and integrating institutional dimensions (such as governance and leadership) into codesign frameworks. This can help to ensure research codesign is integrated into organisational culture and through the work of individual researchers.


Involving people and groups with lived experience in research is important to ensure that research is useful and makes real changes in peoples' lives. Codesign centres on researching with people rather than about people. For true engagement and codesign to occur, university based researchers need to understand why codesign is valuable and need to be trained and supported in using effective methods for the individuals and groups they work with. University based research institutes with missions to improve peoples' experiences of services need to embrace principles and practices of codesign and support their researchers to achieve this. They need to make sure there are appropriate governance structures and support systems that encourage people to codesign in their research. This study focussed on university based researchers as a key stakeholder group for effective codesign. These researchers work in an Australian research institute (Flinders Caring Futures Institute). They shared information about the kinds of codesign they did in their research projects, and the things that helped and other things that made it hard to utilise codesign in their research. We also asked the researchers about how research institutions could better support codesign practices. Researchers in our study shared their views that codesign is a complex process. Building relationships and trust as part of research codesign needs time and resources. Researchers had ideas about how to improve codesign as a practice in research institutes. These include providing formal and informal training, opportunities to share experiences, peer support and learning, making sure there are community representatives involved in the leadership of research organisations, and increased funding support for codesign.

10.
Front Psychiatry ; 13: 1001459, 2022.
Article in English | MEDLINE | ID: mdl-36545035

ABSTRACT

There has been an increase in the occurrence of sudden onset functional tic-like behaviours in adolescents during the COVID-19 pandemic, which has had a significant impact on the affected individual's ability to engage with education. The aim of this article is to generate discussion and inform practice within schools with regard to the management of functional tic-like behaviours. An advice sheet for schools has been produced based on clinical expertise and experience of consulting with schools around the management within education settings. Case examples are presented highlighting the importance and impact of these strategies. We also highlight the need for further evaluation of the effectiveness of the advice sheet in collaboration with schools and families.

11.
Bioengineering (Basel) ; 9(10)2022 Sep 27.
Article in English | MEDLINE | ID: mdl-36290479

ABSTRACT

Shiga toxin-producing E. coli (STEC) is a common cause of bloody diarrhea. The pathology of STEC infection derives from two exotoxins-Shiga toxin 1 (Stx1) and Shiga toxin 2 (Stx2)-that are secreted by STEC in the gut, from where they are systemically absorbed, causing severe kidney damage leading to hemolytic uremic syndrome (HUS). Currently, there is no effective treatment for HUS, and only supportive care is recommended. We report the engineering of a panel of designed ankyrin repeat proteins (DARPin) with potent neutralization activity against Stx2a, the major subtype associated with HUS. The best dimeric DARPin, SD5, created via a combination of directed evolution and rational design, neutralizes Stx2a with a half maximal effective concentration (EC50) of 0.61 nM in vitro. The two monomeric DARPin constituents of SD5 exhibit complementary functions-SHT targets the enzymatic A subunit of Stx2a and inhibits the toxin's catalytic activity, while DARPin #3 binds the B subunit, based on the cryo-EM study, and induces a novel conformational change in the B subunit that distorts its five-fold symmetry and presumably interferes with toxin attachment to target cells. SD5 was fused to an albumin-binding DARPin, and the resulting trimeric DARPin DA1-SD5 efficiently protects mice in a toxin challenge model, pointing to a high potential of this DARPin as a therapeutic for STEC infection. Finally, the unprecedented toxin conformational change induced by DARPin #3 represents a novel mode of action for neutralizing Stx2 toxicity and reveals new targets for future drug development.

12.
Aust Educ Res ; : 1-20, 2022 Aug 30.
Article in English | MEDLINE | ID: mdl-36061956

ABSTRACT

Although 'child safety' is now a national policy priority in Australia, there is little research exploring the practices in schools that contribute to children and young people's felt sense of safety and wellbeing. Drawing on a mixed-method Australian Research Council (ARC) Discovery project, this article presents findings from interviews with school staff (N = 10), leaders (N = 5) and nine focus groups with students (N = 58), in primary and secondary schools in three Australian states (New South Wales, Victoria and South Australia). We employ relational ethics, recognition theory and the theory of practice architectures to explore practices at school that support student wellbeing and safety. The findings contribute significantly to understanding the 'bundled' nature of current practices and the conditions that enable and constrain these. Close attention to these findings is critical as schools seek to operationalise the National Child Safe Principles and refine ongoing safeguarding procedures. The findings have informed the development of an online survey that is currently testing, on a much larger scale, which elements of ethical practice are most positively associated with students' safety, wellbeing and recognition at school.

13.
Vet Pathol ; 59(4): 648-660, 2022 07.
Article in English | MEDLINE | ID: mdl-35521761

ABSTRACT

There is a need to standardize pathologic endpoints in animal models of SARS-CoV-2 infection to help benchmark study quality, improve cross-institutional comparison of data, and assess therapeutic efficacy so that potential drugs and vaccines for SARS-CoV-2 can rapidly advance. The Syrian hamster model is a tractable small animal model for COVID-19 that models clinical disease in humans. Using the hamster model, the authors used traditional pathologic assessment with quantitative image analysis to assess disease outcomes in hamsters administered polyclonal immune sera from previously challenged rhesus macaques. The authors then used quantitative image analysis to assess pathologic endpoints across studies performed at different institutions using different tissue processing protocols. The authors detail pathological features of SARS-CoV-2 infection longitudinally and use immunohistochemistry to quantify myeloid cells and T lymphocyte infiltrates during SARS-CoV-2 infection. High-dose immune sera protected hamsters from weight loss and diminished viral replication in tissues and reduced lung lesions. Cumulative pathology scoring correlated with weight loss and was robust in distinguishing IgG efficacy. In formalin-infused lungs, quantitative measurement of percent area affected also correlated with weight loss but was less robust in non-formalin-infused lungs. Longitudinal immunohistochemical assessment of interstitial macrophage infiltrates showed that peak infiltration corresponded to weight loss, yet quantitative assessment of macrophage, neutrophil, and CD3+ T lymphocyte numbers did not distinguish IgG treatment effects. Here, the authors show that quantitative image analysis was a useful adjunct tool for assessing SARS-CoV-2 treatment outcomes in the hamster model.


Subject(s)
COVID-19 , Rodent Diseases , Animals , COVID-19/veterinary , COVID-19 Vaccines , Cricetinae , Disease Models, Animal , Humans , Immune Sera , Immunoglobulin G , Lung/pathology , Macaca mulatta , Mesocricetus , Rodent Diseases/pathology , SARS-CoV-2 , Weight Loss
14.
J Adv Nurs ; 78(1): e6-e20, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34002886

ABSTRACT

AIM: To present the first iteration of the caring life-course theory. BACKGROUND: Despite requiring care from birth to death, a person's universal or fundamental care needs and the subsequent care provision, either by self or others, has yet to be presented within a life-course perspective. Accurately describing the care people require across their lifespan enables us to identify who, what type, how and where this care should be provided. This novel perspective can help to legitimise a person's care needs and the support they require from wider care systems and contexts. DESIGN: Discussion paper outlines theory development. We adopted an inductive approach to theory development, drawing upon existing literature and the team's diverse experiences. Our theoretical insights were refined through a series of collaborative meetings to define the theory's constructs, until theoretical saturation was reached. DISCUSSION: Fourteen constructs are identified as essential to the theory. We propose it is possible, using these constructs, to generate caring life-course trajectories and predict divergences in these trajectories. The novel contribution of the theory is the interplay between understanding a person's care needs and provision within the context of their lifespan and personal histories, termed their care biography, and understanding a person's care needs and provision at specific points in time within a given care network and socio-political context. IMPACT FOR NURSING: The caring life-course theory can provide a roadmap to inform nursing and other care industry sectors, providing opportunities to integrate and deliver care from the perspective of the person and their care history, trajectories and networks, with those of professional care teams. It can help to shape health, social and economic policy and involve individuals, families and communities in more constructive ways of talking about the importance of care for improved quality of life and healthy societies.


Subject(s)
Quality of Life , Self Care , Humans , Palliative Care
15.
Eur Child Adolesc Psychiatry ; 31(3): 403-423, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34313861

ABSTRACT

Part II of the European clinical guidelines for Tourette syndrome and other tic disorders (ECAP journal, 2011) provides updated information and recommendations for psychological interventions for individuals with tic disorders, created by a working group of the European Society for the Study of Tourette Syndrome (ESSTS). A systematic literature search was conducted to obtain original studies of psychological interventions for tic disorders, published since the initial European clinical guidelines were issued. Relevant studies were identified using computerized searches of the MEDLINE and PsycINFO databases for the years 2011-2019 and a manual search for the years 2019-2021. Based on clinical consensus, psychoeducation is recommended as an initial intervention regardless of symptom severity. According to a systematic literature search, most evidence was found for Habit Reversal Training (HRT), primarily the expanded package Comprehensive Behavioral Intervention for Tics (CBIT). Evidence was also found for Exposure and Response Prevention (ERP), but to a lesser degree of certainty than HRT/CBIT due to fewer studies. Currently, cognitive interventions and third-wave interventions are not recommended as stand-alone treatments for tic disorders. Several novel treatment delivery formats are currently being evaluated, of which videoconference delivery of HRT/CBIT has the most evidence to date. To summarize, when psychoeducation alone is insufficient, both HRT/CBIT and ERP are recommended as first-line interventions for tic disorders. As part of the development of the clinical guidelines, a survey is reported from ESSTS members and other tic disorder experts on preference, use and availability of psychological interventions for tic disorders.


Subject(s)
Tic Disorders , Tics , Tourette Syndrome , Behavior Therapy , Humans , Psychosocial Intervention , Tics/therapy , Tourette Syndrome/psychology , Tourette Syndrome/therapy
16.
Eur Child Adolesc Psychiatry ; 31(3): 383-402, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34661764

ABSTRACT

In 2011 a working group of the European Society for the Study of Tourette Syndrome (ESSTS) has developed the first European assessment guidelines for Tourette syndrome (TS). Now, we present an updated version 2.0 of these European clinical guidelines for Tourette syndrome and other tic disorders, part I: assessment. Therefore, the available literature has been thoroughly screened, supplemented with national guidelines across countries and discussions among ESSTS experts. Diagnostic changes between DSM-IV and DSM-5 classifications were taken into account and new information has been added regarding differential diagnoses, with an emphasis on functional movement disorders in both children and adults. Further, recommendations regarding rating scales to evaluate tics, comorbidities, and neuropsychological status are provided. Finally, results from a recently performed survey among ESSTS members on assessment in TS are described. We acknowledge that the Yale Global Tic Severity Scale (YGTSS) is still the gold standard for assessing tics. Recommendations are provided for scales for the assessment of tics and psychiatric comorbidities in patients with TS not only in routine clinical practice, but also in the context of clinical research. Furthermore, assessments supporting the differential diagnosis process are given as well as tests to analyse cognitive abilities, emotional functions and motor skills.


Subject(s)
Tic Disorders , Tics , Tourette Syndrome , Adult , Child , Comorbidity , Diagnostic and Statistical Manual of Mental Disorders , Humans , Tic Disorders/diagnosis , Tourette Syndrome/diagnosis , Tourette Syndrome/epidemiology
17.
Lab Anim ; 56(2): 135-146, 2022 Apr.
Article in English | MEDLINE | ID: mdl-34494470

ABSTRACT

The term 'culture of care' in the context of using animals for scientific purpose describes the culture in organisations that provides support to staff to strive for continuous improvement in:• animal care and welfare;• support and recognition of staff involved in the animal care and use programme;• scientific quality;• openness and transparency.We developed a systematic process for reporting observations and events that have the potential to help with continuous learning, improving animal welfare and supporting staff. The process took learning from the safety, health and environment arena on accident prevention. The two key aspects were (a) the systematic logging of observations and events; and (b) the learning approach to following up on observations. Underpinning our systematic process is the 'Learning from Observations and Events Log'. Reported observations and events can relate to positive practices, general observations as well as near misses.We created an environment to promote continuous improvement for both animals and staff by recognising, rewarding and sharing good practice, as well as where near misses are openly reported and learnt from. Supporting animal welfare, staff welfare, improving scientific quality and transparency are the four key pillars of a positive culture of care.We recognised early on that using a system and learning approach to follow up on observations and events rather than a people and blame approach was key to developing open reporting and a positive culture. In the systems approach, errors are consequences rather than causes, having their origins in systemic factors.


Subject(s)
Safety Management , Humans
18.
AIMS Mol Sci ; 8(4): 257-274, 2021.
Article in English | MEDLINE | ID: mdl-34938854

ABSTRACT

Patients with chromosome 22q11.2 deletion syndromes classically present with variable cardiac defects, parathyroid and thyroid gland hypoplasia, immunodeficiency and velopharyngeal insufficiency, developmental delay, intellectual disability, cognitive impairment, and psychiatric disorders. New technologies including chromosome microarray have identified smaller deletions in the 22q11.2 region. An increasing number of studies have reported patients presenting with various features harboring smaller 22q11.2 deletions, suggesting a need to better elucidate 22q11.2 deletions and their phenotypic contributions so that clinicians may better guide prognosis for families. We identified 16 pediatric patients at our institution harboring various 22q11.2 deletions detected by chromosomal microarray and report their clinical presentations. Findings include various neurodevelopmental delays with the most common one being attention deficit hyperactivity disorder (ADHD), one reported case of infant lethality, four cases of preterm birth, one case with dual diagnoses of 22q11.2 microdeletion and Down syndrome. We examined potential genotypic contributions of the deleted regions.

19.
Arch Dis Child ; 2021 Nov 01.
Article in English | MEDLINE | ID: mdl-34725047

ABSTRACT

This paper will review complex motor stereotypies and provide a summary of the current proposed treatment pathway.

SELECTION OF CITATIONS
SEARCH DETAIL
...