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1.
BMC Med ; 21(1): 110, 2023 03 29.
Artigo em Inglês | MEDLINE | ID: mdl-36978074

RESUMO

BACKGROUND: The global spread of COVID-19 created an explosion in rapid tests with results in < 1 hour, but their relative performance characteristics are not fully understood yet. Our aim was to determine the most sensitive and specific rapid test for the diagnosis of SARS-CoV-2. METHODS: Design: Rapid review and diagnostic test accuracy network meta-analysis (DTA-NMA). ELIGIBILITY CRITERIA: Randomized controlled trials (RCTs) and observational studies assessing rapid antigen and/or rapid molecular test(s) to detect SARS-CoV-2 in participants of any age, suspected or not with SARS-CoV-2 infection. INFORMATION SOURCES: Embase, MEDLINE, and Cochrane Central Register of Controlled Trials, up to September 12, 2021. OUTCOME MEASURES: Sensitivity and specificity of rapid antigen and molecular tests suitable for detecting SARS-CoV-2. Data extraction and risk of bias assessment: Screening of literature search results was conducted by one reviewer; data abstraction was completed by one reviewer and independently verified by a second reviewer. Risk of bias was not assessed in the included studies. DATA SYNTHESIS: Random-effects meta-analysis and DTA-NMA. RESULTS: We included 93 studies (reported in 88 articles) relating to 36 rapid antigen tests in 104,961 participants and 23 rapid molecular tests in 10,449 participants. Overall, rapid antigen tests had a sensitivity of 0.75 (95% confidence interval 0.70-0.79) and specificity of 0.99 (0.98-0.99). Rapid antigen test sensitivity was higher when nasal or combined samples (e.g., combinations of nose, throat, mouth, or saliva samples) were used, but lower when nasopharyngeal samples were used, and in those classified as asymptomatic at the time of testing. Rapid molecular tests may result in fewer false negatives than rapid antigen tests (sensitivity: 0.93, 0.88-0.96; specificity: 0.98, 0.97-0.99). The tests with the highest sensitivity and specificity estimates were the Xpert Xpress rapid molecular test by Cepheid (sensitivity: 0.99, 0.83-1.00; specificity: 0.97, 0.69-1.00) among the 23 commercial rapid molecular tests and the COVID-VIRO test by AAZ-LMB (sensitivity: 0.93, 0.48-0.99; specificity: 0.98, 0.44-1.00) among the 36 rapid antigen tests we examined. CONCLUSIONS: Rapid molecular tests were associated with both high sensitivity and specificity, while rapid antigen tests were mainly associated with high specificity, according to the minimum performance requirements by WHO and Health Canada. Our rapid review was limited to English, peer-reviewed published results of commercial tests, and study risk of bias was not assessed. A full systematic review is required. REVIEW REGISTRATION: PROSPERO CRD42021289712.


Assuntos
COVID-19 , SARS-CoV-2 , Humanos , SARS-CoV-2/genética , COVID-19/diagnóstico , Metanálise em Rede , Viés , Testes Diagnósticos de Rotina , Sensibilidade e Especificidade , Teste para COVID-19
2.
Clin Genet ; 104(3): 377-383, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37194472

RESUMO

We evaluated the diagnostic yield using genome-slice panel reanalysis in the clinical setting using an automated phenotype/gene ranking system. We analyzed whole genome sequencing (WGS) data produced from clinically ordered panels built as bioinformatic slices for 16 clinically diverse, undiagnosed cases referred to the Pediatric Mendelian Genomics Research Center, an NHGRI-funded GREGoR Consortium site. Genome-wide reanalysis was performed using Moon™, a machine-learning-based tool for variant prioritization. In five out of 16 cases, we discovered a potentially clinically significant variant. In four of these cases, the variant was found in a gene not included in the original panel due to phenotypic expansion of a disorder or incomplete initial phenotyping of the patient. In the fifth case, the gene containing the variant was included in the original panel, but being a complex structural rearrangement with intronic breakpoints outside the clinically analyzed regions, it was not initially identified. Automated genome-wide reanalysis of clinical WGS data generated during targeted panels testing yielded a 25% increase in diagnostic findings and a possibly clinically relevant finding in one additional case, underscoring the added value of analyses versus those routinely performed in the clinical setting.


Assuntos
Biologia Computacional , Genômica , Humanos , Sequenciamento Completo do Genoma , Fenótipo , Íntrons
3.
J Exp Biol ; 222(Pt 16)2019 08 16.
Artigo em Inglês | MEDLINE | ID: mdl-31331940

RESUMO

Blood flow patterns and heart rate have rarely been investigated in freely swimming turtles and their regulation during swimming is unknown. In this study, we investigated the blood flow patterns and heart rate in surfacing and during graded, submerged swimming activity in common snapping turtles. We further investigated the effects of beta-adrenergic and cholinergic receptor blockade on blood flow and heart rate during these activities. Our findings illustrate that surfacing is accompanied by an increase in heart rate that is primarily due to beta-adrenergic stimulation. During swimming, this mechanism also increases heart rate while vagal withdrawal facilitates a systemic to pulmonary (left to right) shunt. The results indicate there may be important taxonomic effects on the responses of cardiac function to activity in turtle species.


Assuntos
Frequência Cardíaca , Hemodinâmica , Receptores Adrenérgicos beta/fisiologia , Receptores Colinérgicos/fisiologia , Natação/fisiologia , Tartarugas/fisiologia , Antagonistas Adrenérgicos beta/farmacologia , Animais , Antagonistas Colinérgicos/farmacologia , Frequência Cardíaca/efeitos dos fármacos , Hemodinâmica/efeitos dos fármacos , Tartarugas/sangue
4.
Dev Med Child Neurol ; 61(3): 242-285, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30671947

RESUMO

AIM: These international clinical practice recommendations (CPR) for developmental coordination disorder (DCD), initiated by the European Academy of Childhood Disability (EACD), aim to address key questions on the definition, diagnosis, assessment, intervention, and psychosocial aspects of DCD relevant for clinical practice. METHOD: Key questions in five areas were considered through literature reviews and formal expert consensus. For recommendations based on evidence, literature searches on 'mechanisms', 'assessment', and 'intervention' were updated since the last recommendations in 2012. New searches were conducted for 'psychosocial issues' and 'adolescents/adults'. Evidence was rated according to the Oxford Centre for Evidence-Based Medicine (level of evidence [LOE] 1-4) and transferred into recommendations. For recommendations based on formal consensus, two meetings of an international, multidisciplinary expert panel were conducted with a further five Delphi rounds to develop good clinical practice (GCP) recommendations. RESULTS: Thirty-five recommendations were made. Eight were based on the evidence from literature reviews (three on 'assessment', five on 'intervention'). Twenty-two were updated from the 2012 recommendations. New recommendations relate to diagnosis and assessment (two GCPs) and psychosocial issues (three GCPs). Additionally, one new recommendation (LOE) reflects active video games as adjuncts to more traditional activity-oriented and participation-oriented interventions, and two new recommendations (one GCP, one LOE) were made for adolescents and adults with DCD. INTERPRETATION: The CPR-DCD is a comprehensive overview of DCD and current understanding based on research evidence and expert consensus. It reflects the state of the art for clinicians and scientists of varied disciplines. The international CPR-DCD may serve as a basis for national guidelines. WHAT THIS PAPER ADDS: Updated international clinical practice guidelines on developmental coordination disorder (DCD). Refined and extended recommendations on clinical assessment and intervention for DCD. A critical synopsis of current research on mechanisms of DCD. A critical synopsis of psychosocial issues in DCD, with implications for clinical practice. The first international recommendations to consider adolescents and adults with DCD.


Assuntos
Transtornos das Habilidades Motoras/diagnóstico , Transtornos das Habilidades Motoras/terapia , Adolescente , Adulto , Criança , Medicina Baseada em Evidências , Humanos , Transtornos das Habilidades Motoras/psicologia , Guias de Prática Clínica como Assunto , Adulto Jovem
5.
Qual Life Res ; 28(4): 925-934, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30536221

RESUMO

PURPOSE: Developmental coordination disorder (DCD) is a neurodevelopmental disorder with an estimated prevalence of 2-6% in school-aged children. Children with DCD score lower in multiple quality of life (QOL) domains. However, the effect of a child's DCD on their parents' and family's QOL has not previously been assessed in a UK population. We aimed to assess parental and family QOL within UK families containing at least one child aged 6-18 years who was diagnosed with DCD. METHODS: A mixed-methods study was designed, using an online questionnaire that incorporated the Family QOL Scale and the 12-Item Short Form Health Survey. RESULTS: The emotional and disability support domains of family QOL were markedly negatively affected by DCD, with lack of support by medical and educational professionals cited as a major source of stress. Parental mental health was also negatively affected. In many cases, the child's DCD impacted on parental work life, family social life and siblings' well-being. CONCLUSIONS: Having a child with DCD has a considerable impact on families. This needs to be recognised by healthcare and other professionals; otherwise, services and support may not be appropriately targeted and the negative sequelae of DCD may ripple beyond the individual with costly social and economic consequences.


Assuntos
Transtornos das Habilidades Motoras/diagnóstico , Qualidade de Vida/psicologia , Adulto , Feminino , Humanos , Masculino , Transtornos das Habilidades Motoras/patologia
6.
Comput Inform Nurs ; 36(11): 525-529, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30134257

RESUMO

Clinical decision support systems are used to ensure compliance with guidelines and can assist providers in improving quality of care. This quality improvement initiative was designed to evaluate the use of a clinical decision support system to improve specialist referral rate for patients with severe aortic stenosis. A clinical decision support system for cardiology and primary care providers was implemented to improve diagnosis of severe aortic stenosis. The ordering provider received an electronic medical record in-basket alert providing feedback and recommendations for referral to specialist for evaluation. The echocardiogram data were evaluated for change in specialist referral rate. Before clinical decision support system implementation, the referral rate was 72% for a 3-month period. All providers ordering echocardiograms received clinical decision support system notification if patient results met criteria based on valve severity (aortic valve area < 1.0 cm, mean gradient ≥ 40 mm Hg, peak velocity ≥ 4.0 m/s). After implementation, clinical decision support system referral rate was 97.5%, a 24.6% increase in referral rates (P < .001). Low referral rates for patients with severe aortic stenosis are a recognized challenge. Utilizing the clinical decision support system to improve awareness of quality guidelines and recommendations was associated with increased adherence to referral guidelines by providers. This innovation is pertinent to practice and enhances the functionality of the electronic medical record by providing real-time feedback to providers to improve practice. Referral rates for patients with severe aortic stenosis can be improved with use of provider clinical decision support system.


Assuntos
Estenose da Valva Aórtica/terapia , Sistemas de Apoio a Decisões Clínicas , Melhoria de Qualidade , Encaminhamento e Consulta/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Índice de Gravidade de Doença
7.
Epilepsy Behav ; 72: 122-126, 2017 07.
Artigo em Inglês | MEDLINE | ID: mdl-28575760

RESUMO

BACKGROUND: Benign epilepsy with centro-temporal spikes (BECTS) is a common childhood epilepsy syndrome also known as Rolandic Epilepsy (RE). Neurocognitive phenotypes have been described with greater focus on attention, reading and language domains but there have been far fewer studies focusing on motor functioning. This study included measures of motor, language and cognition in order to investigate the range, degree and pattern of difficulties associated with BECTS in a case series of children, but with a particular emphasis on motor skills. METHOD: Twenty-one children aged between 8 and 16years with a diagnosis of BECTS were asked to complete standardized assessments for language, cognition, motor functioning and handwriting. RESULTS: When measuring across language, cognitive and motor domains, 19 (90.48%) of the twenty-one children with a diagnosis of BECTS showed some difficulties on at least one area of functioning using standardized assessment tests. Of particular note nearly half (47.62%) of the children had some difficulties in one or more areas of motor functioning. DISCUSSION: Children with BECTS have a heterogeneous pattern of neurocognitive impairments. The presence of motor difficulties (DCD) should be considered in all children routinely seen in clinical settings with BECTS and included in any screening processes.


Assuntos
Epilepsia Rolândica/epidemiologia , Epilepsia Rolândica/fisiopatologia , Transtornos das Habilidades Motoras/epidemiologia , Transtornos das Habilidades Motoras/fisiopatologia , Testes Neuropsicológicos , Adolescente , Atenção/fisiologia , Criança , Cognição/fisiologia , Estudos de Coortes , Eletroencefalografia/tendências , Epilepsia Rolândica/psicologia , Feminino , Humanos , Masculino , Destreza Motora/fisiologia , Transtornos das Habilidades Motoras/psicologia
8.
Hum Brain Mapp ; 36(10): 3935-49, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26177579

RESUMO

Benign Epilepsy with Centro-Temporal Spikes (BECTS) is a common childhood epilepsy associated with deficits in several neurocognitive domains. Neurophysiological studies in BECTS often focus on centro-temporal spikes, but these correlate poorly with morphology and cognitive impairments. To better understand the neural profile of BECTS, we studied background brain oscillations, thought to be integrally involved in neural network communication, in sensorimotor areas. We used independent component analysis of temporally correlated sources on magnetoencephalography recordings to assess sensorimotor resting-state network activity in BECTS patients and typically developing controls. We also investigated the variability of oscillatory characteristics within focal primary motor cortex (M1), localized with a separate finger abduction task. We hypothesized that background oscillations would differ between patients and controls in the sensorimotor network but not elsewhere, especially in the beta band (13-30 Hz) because of its role in network communication and motor processing. The results support our hypothesis: in the sensorimotor network, patients had a greater variability in oscillatory amplitude compared to controls, whereas there was no difference in the visual network. Network measures did not correlate with age. The coefficient of variation of resting M1 peak frequency correlated negatively with age in the beta band only, and was greater than average for a number of patients. Our results point toward a "disorganized" functional sensorimotor network in BECTS, supporting a neurodevelopmental delay in sensorimotor cortex. Our findings further suggest that investigating the variability of oscillatory peak frequency may be a useful tool to investigate deficits of disorganization in neurodevelopmental disorders.


Assuntos
Encéfalo/crescimento & desenvolvimento , Encéfalo/fisiopatologia , Epilepsia Rolândica/fisiopatologia , Córtex Sensório-Motor/crescimento & desenvolvimento , Córtex Sensório-Motor/fisiopatologia , Adolescente , Envelhecimento/fisiologia , Ritmo beta , Criança , Eletroencefalografia , Feminino , Dedos/inervação , Lateralidade Funcional/fisiologia , Humanos , Testes de Inteligência , Magnetoencefalografia , Masculino , Córtex Motor/crescimento & desenvolvimento , Córtex Motor/fisiopatologia , Rede Nervosa/fisiopatologia , Testes Neuropsicológicos , Vias Visuais/fisiopatologia
9.
Phys Occup Ther Pediatr ; 35(2): 103-15, 2015 May.
Artigo em Inglês | MEDLINE | ID: mdl-25247852

RESUMO

BACKGROUND: Developmental Coordination Disorder (DCD) affects the learning and performance of everyday motor skills. It commonly co-occurs with other developmental disorders and a range of associated psycho-social impairments. Recent evidence-based guidelines on diagnosis, assessment, and intervention provide valuable information for practitioners. However these are directed primarily at German-speaking countries and focus on work with children. AIM: The aim of this project was to consider the application of these guidelines in the UK and to extend them for use with adults with DCD. METHODS: Individuals with DCD, parents, and professionals from a wide range of disciplines were invited to two workshops to discuss and debate the guidelines, to adapt them for the UK and produce dissemination materials. RESULTS: A working definition of DCD was agreed, minor revisions were made to the guidelines to reflect the UK context, an extension for adults was compiled and a series of leaflets was produced to disseminate this information to health and education professionals, parents, and employers. CONCLUSIONS: This work will raise awareness of the condition across different professional groups. It provides information to help those working with children and adults with DCD in the UK to assist in the process of diagnosis, assessment, and intervention.


Assuntos
Transtornos das Habilidades Motoras/diagnóstico , Transtornos das Habilidades Motoras/terapia , Guias de Prática Clínica como Assunto , Adolescente , Adulto , Criança , Pré-Escolar , Congressos como Assunto , Europa (Continente) , Humanos , Disseminação de Informação , Folhetos , Terminologia como Assunto , Reino Unido , Adulto Jovem
10.
Neuropsychiatr Dis Treat ; 20: 1169-1177, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38831936

RESUMO

Traumatic brain injury (TBI) is a serious public health concern and overrepresented among justice-involved populations. An emerging area of research focuses on the complex, interrelated and unmet health and social needs of justice-involved women and youth with TBI. Evidence of these needs continues to grow, yet the health and justice systems continue to underperform in supporting the health and social care of justice-involved women and youth. This commentary is a call to action to begin to redress these gaps. We first provide an overview of the needs of women and youth with TBI that affect their transition from custody to community, including those related to victimization, trauma, mental health, substance use, and homelessness. We then highlight the current gaps in knowledge and practice with respect to interventions for women and youth with TBI at transition from custody. The available evidence for the impact of interventions on people with head injury who are justice-involved is sparse, especially studies of interventions focused on women and youth. We conclude with a call for implementation science studies to support translation from research to practice, emphasizing that researchers, practitioners, policy makers, and women and youth at transition should collaborate to develop, implement, and evaluate accommodations and interventions for TBI. To have meaningful, positive impacts on the systems that serve these women and youth, interdisciplinary service delivery approaches should aim to prevent, raise awareness, identify, and provide timely support and services for the varied needs of women and youth with TBI in transition.

11.
PLoS One ; 19(1): e0296078, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38170719

RESUMO

Screening for vulnerability factors associated with historic suicidality and self-harm on entry to prison is critical to help prisons understand how to allocate extremely limited mental health resources. It has been established that having previous suicide attempts increases odds of future suicidality and self-harm in prison. We utilised administrative screening data from 665 adult male prisoners on entry to a category B prison in Wales, UK, collected using the Do-IT Profiler. This sample represents 16% of all prisoners who entered that prison during a 26-month period. 12% of prisoners reported a history of attempted suicide, 11% reported historic self-harm, and 8% reported a history of both. Historic traumatic brain injury and substance use problems were associated with a 3.3- and 1.9- times increased odds of a historic suicide attempt, respectively, but no significant increased risk of historic self-harm (95% CI: 1.51-6.60 and 1.02-3.50). However, those who were bullied at school had 2.7 times increased odds of reporting a history of self-harm (95% CI: 1.63-6.09). The most salient risk factors associated with both historic suicide and self-harm were higher levels of functional neurodisability (odds ratio 0.6 for a 1 standard deviation change in score, 95% CI: 0.35-0.75), and mood disturbance (odds ratio 2.1 for a 1 standard deviation change in score, 95% CI: 1.26-3.56). Therefore, it could be beneficial for prisons to screen for broader profiles of needs, to better understand how to provide appropriate services to prisoners vulnerable to suicide and self-harm. Multidisciplinary care pathways for prisoner mental health interventions are important, to account for complex multimorbidity. Adaptations may be needed for mental health interventions to be appropriate for, for example, a prisoner with a brain injury. Understanding this broad profile of vulnerability could also contribute to more compassionate responses to suicide and self-harm from prison staff.


Assuntos
Bullying , Prisioneiros , Comportamento Autodestrutivo , Transtornos Relacionados ao Uso de Substâncias , Adulto , Humanos , Masculino , Comportamento Autodestrutivo/psicologia , Prisioneiros/psicologia , Prisões , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , País de Gales
12.
J Am Med Inform Assoc ; 31(2): 472-478, 2024 Jan 18.
Artigo em Inglês | MEDLINE | ID: mdl-37665746

RESUMO

OBJECTIVE: We implemented a chatbot consent tool to shift the time burden from study staff in support of a national genomics research study. MATERIALS AND METHODS: We created an Institutional Review Board-approved script for automated chat-based consent. We compared data from prospective participants who used the tool or had traditional consent conversations with study staff. RESULTS: Chat-based consent, completed on a user's schedule, was shorter than the traditional conversation. This did not lead to a significant change in affirmative consents. Within affirmative consents and declines, more prospective participants completed the chat-based process. A quiz to assess chat-based consent user understanding had a high pass rate with no reported negative experiences. CONCLUSION: Our report shows that a structured script can convey important information while realizing the benefits of automation and burden shifting. Analysis suggests that it may be advantageous to use chatbots to scale this rate-limiting step in large research projects.


Assuntos
Genômica , Consentimento Livre e Esclarecido , Humanos , Estudos Prospectivos , Software , Comunicação
13.
Artigo em Inglês | MEDLINE | ID: mdl-36673857

RESUMO

BACKGROUND: We developed the Italian version of the adult developmental co-ordination disorders/dyspraxia checklist (ADC), providing reliability and concurrent validity data for the scale (Aim 1). In addition, we investigated the relationships between motor coordination difficulties and different autistic traits (Aim 2). METHODS: 498 participants (341 females; age range = 18-34) underwent the Italian version of the ADC, as well as a handwriting speed test, the autism spectrum quotient, the empathy quotient, and the systemizing quotient. RESULTS: The distinction between three main factors (A, B, and C) identified in the original version of the ADC was confirmed here. Internal consistency of the ADC subscales was adequate, as well as the correlation with the handwriting speed test used to assess concurrent validity. No substantial sex differences on the ADC scores were found. Furthermore, data revealed that poor autistic-related communication skills and lower levels of systemizing tendencies were, among all the investigated autistic traits, those more strongly associated with higher motor coordination difficulties. CONCLUSIONS: The Italian ADC seems a valuable tool for assessing motor coordination difficulties in adults and can reveal the nuanced impact exerted by different autistic traits on self-reported motor functioning.


Assuntos
Apraxias , Transtorno Autístico , Transtornos das Habilidades Motoras , Humanos , Adulto , Masculino , Feminino , Adolescente , Adulto Jovem , Autorrelato , Lista de Checagem , Reprodutibilidade dos Testes , Itália
14.
Int J Prison Health ; 2023 Jan 24.
Artigo em Inglês | MEDLINE | ID: mdl-36689249

RESUMO

PURPOSE: Looked after children (LAC) are criminalised at five times the rate of children in the general population. Children in contact with both child welfare and child justice systems have higher rates of neurodisability and substance use problems, and LAC in general have high rates of school exclusion, homelessness and unemployment. This study aims to understand whether these factors persist in LAC who are in prison as adults. DESIGN/METHODOLOGY/APPROACH: Administrative data collected by the Do-IT profiler screening tool in a prison in Wales, UK, were analysed to compare sentenced prisoners who were LAC (n = 631) to sentenced prisoners who were not LAC (n = 2,201). The sample comprised all prisoners who were screened on entry to prison in a two-year period. FINDINGS: Prisoners who were LAC scored more poorly on a functional screener for neurodisability (effect size = 0.24), and on four self-report measures capturing traits of dyslexia (0.22), attention-deficit hyperactivity disorder (0.40), autism spectrum disorders (0.34) and developmental co-ordination disorder (0.33). Prisoners who were LAC were more likely to have been to a pupil referral unit (0.24), have substance use problems (0.16), be homeless or marginally housed (0.18) and be unemployed or unable to work due to disability (0.13). ORIGINALITY/VALUE: This study uniquely contributes to our understanding of prisoners who were LAC as a target group for intervention and support with re-integration into the community upon release. LAC in prison as adults may require additional interventions to help with employment, housing and substance use. Education programmes in prison should screen for neurodisability, to develop strategies to support engagement.


Assuntos
Prisioneiros , Transtornos Relacionados ao Uso de Substâncias , Adulto , Criança , Humanos , Prisões , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Emprego , País de Gales
15.
bioRxiv ; 2023 Jan 24.
Artigo em Inglês | MEDLINE | ID: mdl-36747692

RESUMO

Objective: To conduct a retrospective analysis comparing traditional human-based consenting to an automated chat-based consenting process. Materials and Methods: We developed a new chat-based consent using our IRB-approved consent forms. We leveraged a previously developed platform (GiaⓇ, or "Genetic Information Assistant") to deliver the chat content to candidate participants. The content included information about the study, educational information, and a quiz to assess understanding. We analyzed 144 families referred to our study during a 6-month time period. A total of 37 families completed consent using the traditional process, while 35 families completed consent using Gia. Results: Engagement rates were similar between both consenting methods. The median length of the consent conversation was shorter for Gia users compared to traditional (44 vs. 76 minutes). Additionally, the total time from referral to consent completion was faster with Gia (5 vs. 16 days). Within Gia, understanding was assessed with a 10-question quiz that most participants (96%) passed. Feedback about the chat consent indicated that 86% of participants had a positive experience. Discussion: Using Gia resulted in time savings for both the participant and study staff. The chatbot enables studies to reach more potential candidates. We identified five key features related to human-centered design for developing a consent chat. Conclusion: This analysis suggests that it is feasible to use an automated chatbot to scale obtaining informed consent for a genomics research study. We further identify a number of advantages when using a chatbot.

16.
Res Involv Engagem ; 9(1): 50, 2023 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-37430378

RESUMO

BACKGROUND: Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-oriented research (POR) is increasingly practiced, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Our primary objective was to explore the training needs of youth (ages 18-25) with NDD to enhance their knowledge, confidence, and skills as research partners. Our secondary objective was to identify the benefits and challenges of engaging youth with NDD in a POR approach. METHODS: Our team of four youth and one parent with lived experience [Youth Engagement in Research (YER) partners] and six researchers engaged in POR to investigate the primary objective via two phases: (1) individual interviews with youth living with NDD and (2) a two-day virtual symposium with focus groups with youth and researchers. Collaborative qualitative content analysis was employed to synthesize the data. Our secondary objective was assessed by asking our YER partners to complete the Public and Patient Engagement Evaluation Tool (PPEET) survey and participate in reflective discussions. RESULTS: Phase 1 participants (n = 7) identified various barriers and facilitators to their engagement in research and offered suggestions to meet their needs through minimizing barriers and integrating facilitators, which would subsequently enhance their knowledge, confidence, and skills as research partners. Informed by phase 1, phase 2 participants (n = 17) prioritized the following POR training needs: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. For delivery methods, participants stated the importance of youth representation, using Universal Design for Learning, and co-learning between youth and researchers. Based on the PPEET data and subsequent discussions, YER partners agreed that they were able to express views freely, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, ensuring multiple methods for engagement, and working under short timelines. CONCLUSION: This study identified important training needs for youth with NDD and for researchers to engage in meaningful POR, which can subsequently inform the co-production of accessible training opportunities with and for youth.


Partnerships between researchers and youth, known as patient-oriented research (POR), are needed to make sure research is meaningful to youth. Our main goal was to explore the training needs of youth (ages 18-25) with neurodevelopmental disabilities (NDD) to enhance their knowledge, confidence, and skills as research partners. To find out, our team of four youth and one parent with lived experience (YER partners) and six researchers completed this project in two parts: 1) interviews with youth and 2) a two-day virtual workshop with youth and researchers. Data from the two parts were reviewed to answer our question. We learned from Part 1 that the needs of participants can be met by providing support and reducing barriers in POR. From Part 2, the top three important topics in partnerships were: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. Participants in the workshop emphasized having different youth represented, using a framework that allows learning for everyone, and co-learning between youth and researchers in the creation of learning materials. Our second goal was to understand the benefits and challenges of our partnership. To assess, YER partners completed a survey and reflected about their experiences. YER partners agreed on being able to express views, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, providing multiple ways to partner, and working under short timelines. Overall, the study described important POR needs for youth and researchers, which can inform future training opportunities.

17.
J Pediatr ; 158(1): 119-23, 123.e1-4, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-20850761

RESUMO

OBJECTIVE: To evaluate the validity of the Beighton score as a generalized measure of hypermobility and to measure the prevalence of hypermobility and pain in a random population of school age children. STUDY DESIGN: Prospective study of 551 children attending various Dutch elementary schools participated; 47% were males (258) and 53% (293) females, age range was 6 to 12 years. Children's joints and movements were assessed according to the Beighton score by qualified physiotherapists and by use of goniometry measuring 16 passive ranges of motion of joints on both sides of the body. RESULTS: More than 35% of children scored more than 5/9 on the Beighton score. Children who scored high on the Beighton score also showed increased range of motion in the other joints measured. Moreover 12.3% of children had symptoms of joint pain, and 9.1% complained of pain after exercise or sports. Importantly, this percentage was independent of the Beighton score. There were no significant differences in Beighton score for sex in this population. CONCLUSION: The Beighton score, when goniometry is used, is a valid instrument to measure generalized joint mobility in school-age children 6 to 12 years. No extra items are needed to improve the scale.


Assuntos
Instabilidade Articular/diagnóstico , Criança , Feminino , Humanos , Instabilidade Articular/epidemiologia , Masculino , Prevalência , Estudos Prospectivos , Reprodutibilidade dos Testes
18.
J Fam Health Care ; 21(4): 29-31, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21980693

RESUMO

Developmental Co-ordination Disorder (DCD), also known as Dyspraxia in the UK, is a common disorder affecting motor co-ordination in children and for many continues into adulthood. This condition is formally recognised by international organisations including the World Health Organisation. DCD is distinct from other motor disorders such as cerebral palsy and stroke. The range of intellectual ability is in line with the general population. Individuals may vary in how their difficulties present. The co-ordination difficulties may affect participation and functioning of everyday life skills in education, work and employment. Children may present with difficulties in writing, typing, riding a bike, self care tasks, and recreational activities. In adulthood many of these difficulties will continue, as well as learning new skills at home and work such as planning, organisation, driving a car and DIY.


Assuntos
Atividades Cotidianas , Apraxia Ideomotora , Adolescente , Apraxia Ideomotora/diagnóstico , Apraxia Ideomotora/psicologia , Apraxia Ideomotora/reabilitação , Criança , Feminino , Desenvolvimento Humano , Humanos , Masculino , Autoimagem , Adulto Jovem
19.
Res Dev Disabil ; 115: 104010, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34139601

RESUMO

BACKGROUND: Developmental Coordination Disorder (DCD), also called Dyspraxia, is a common Neurodevelopmental Disorder (NDD) that affects motor coordination with a marked impact on both academic and day-to-day living activities. It is increasingly clear that NDDs such as Attention-Deficit/Hyperactivity Disorder and Autism Spectrum Disorder may present differently in males and females, resulting in underdiagnoses of women and girls. AIMS: To consider age and gender differences in the presentation of at-risk and probable DCD. METHODS AND PROCEDURES: A sample of 1,476 adults aged 16-60 years were surveyed online using the Adult DCD Checklist. OUTCOMES AND RESULTS: Women with at-risk (n = 1 8 6, 1 6. 6 %) or probable DCD (n = 6 4 3, 5 6. 6 %) reported significantly greater gross motor and non-motor difficulties and significantly greater impact on activities and participation, whereas men with at-risk (n = 58,16.3 %) or probable (n = 177,49.9 %), DCD reported significantly greater fine motor difficulties. Emerging adults (aged 16-25 years) with at-risk (n = 65,14.3 %) or probable (293,64.3 %) DCD reported significantly greater non-motor difficulty than adults (aged 26-60+ years) with at-risk (n = 179,17.5 %) or probable (n = 518, 50.8 %) DCD. CONCLUSIONS AND IMPLICATIONS: Both age and gender differences were found in the presentation of at-risk and probable DCD in adults. This may have implications for the development of future DCD assessment tools and for the training of front-line staff who may encounter individuals with DCD throughout their lives, including teachers, doctors and employers' Human Resources and Occupational Health staff.


Assuntos
Apraxias , Transtorno do Deficit de Atenção com Hiperatividade , Transtorno do Espectro Autista , Transtornos das Habilidades Motoras , Adulto , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Feminino , Humanos , Masculino , Transtornos das Habilidades Motoras/diagnóstico , Transtornos das Habilidades Motoras/epidemiologia , Inquéritos e Questionários
20.
Int J Prison Health ; 17(4): 425-438, 2021 Nov 17.
Artigo em Inglês | MEDLINE | ID: mdl-38902901

RESUMO

PURPOSE: This paper aims to examine the relationship between patterns of functioning in four domains (attention and concentration; social and communication; coordination and organisation; and literacy and numeracy) in women in prison. Also, to consider potential associations between functioning and previous Neurodevelopmental Disorder (NDD) diagnoses, previous mental health diagnoses and history of head injury, self-harm and attempted suicide. DESIGN/METHODOLOGY/APPROACH: Women in one Scottish prison were invited to participate; 87 consented. Women were screened for functional difficulties and asked about their relevant educational and medical history. FINDINGS: Half of participants reported difficulties in one or more domains. All possible combinations of functional difficulties were found. Only eight women reported previous NDD diagnoses. Functional difficulties were significantly associated with history of self-harm, history of attempted suicide and mental health diagnoses. In total, 32% of women reported at least one head injury, but this was not significantly associated with functional difficulties. RESEARCH LIMITATIONS/IMPLICATIONS: The sample was comparatively small and questions were self-report. Analyses were based on within-cohort comparisons due to a lack of appropriate general population data. PRACTICAL IMPLICATIONS: There is a clear need for timely, practical and comprehensive profiling of females in the Justice System. Current systems do not appear to adequately identify women with functional difficulties or other adversity. Greater use of interdisciplinary working and shared training is indicated, as is a move from categorical diagnostic systems towards dimensional approaches. ORIGINALITY/VALUE: This study is the first to investigate associations between difficulties associated with NDDs, mental health difficulties and head injury in women in prison.

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