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PURPOSE: To investigate the treatment of infantile epileptic spasm syndrome (IESS) in Denmark. METHODS: National retrospective cohort study of all patients born 1996-2019 who had a diagnosis of IESS in the National Patient Registry. Medical records were reviewed to evaluate the diagnosis. Patients were included if semiology was compatible with IESS, or if unclear semiology if there was an abnormal EEG or EEG with hypsarrhythmia. RESULTS: Number of cases with a register based IESS diagnosis was 538. Medical records were unavailable in 48 and 164 did not fulfil the inclusion criteria. Thereby the cohort consisted of 326 children. Mean age at onset of IESS was 5.9 months and mean lead time to treatment was 26.6 days (SD= 63.5). Consistent with the Danish treatment guidelines most patients received vigabatrin as first treatment. In the cohort 44.7 % of patients solely received vigabatrin, whereas combined vigabatrin and corticosteroid was given to 28.3 % (either hydrocortisone or prednisolone). Other anti-seizure medication was given to 28.4 % within 90 days of IESS onset. Aetiology was prenatal (40.3 %), perinatal (10.5 %), postnatal (3.7 %), with unknown timing (10.2 %) or with unknown aetiology (33.5 %). The cohort was followed to a mean age of 8.2 years. At latest follow-up severe neurodevelopmental outcome was seen in 44.2 % and 76.4 % still had epilepsy. The incidence of IESS was 22 per 100.000 live births. CONCLUSION: In Denmark treatment algorithm is based on start of treatment with vigabatrin. A total of 44.7 % became seizure free by vigabatrin. Neurodevelopmental outcome was severe. A national incidence could be established.
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Anticonvulsivantes , Espasmos Infantis , Vigabatrina , Humanos , Dinamarca/epidemiologia , Espasmos Infantis/epidemiologia , Espasmos Infantis/tratamento farmacológico , Espasmos Infantis/diagnóstico , Anticonvulsivantes/uso terapêutico , Lactente , Feminino , Masculino , Estudos Retrospectivos , Vigabatrina/uso terapêutico , Eletroencefalografia , Sistema de Registros , Recém-Nascido , Pré-Escolar , Resultado do TratamentoRESUMO
BACKGROUND: Participants' recruitment and retention into community-based interventions can be challenging, especially in research involving ethnic minorities and migrants. Despite known challenges, there are limited reviews that probe recruitment and retention strategies involving ethnic minorities and migrants in the Organisation for Economic Cooperation and Development (OECD) countries. This systematic review aimed to measure recruitment and retention rates and identify the barriers and facilitators to effective recruitment and retention of ethnic minorities and migrants in community-based obesity prevention Randomised Control Trials (RCTs) in OECD countries. METHODS: This review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Five databases (CINAHL, Cochrane, Embase, Medline and PsychInfo) were searched from January 2000 to March 2022, in addition to Google and Google Scholar. Methodological quality and risk of bias were assessed, and pooled analysis and meta-ethnographic analysis were conducted on the included studies. RESULTS: Twenty-five studies were included in the review. The pooled analysis found a 64% rate of recruitment of ethnic minorities in RCTs, with a retention rate of 71%. Key facilitators identified were-use of multiple communication channels, incentives, recruiting community champions, participant convenience and employing culturally sensitive strategies. Key barriers to participation were limited access to study sites, time constraints, limited trust, perceived fear, and anxiety. CONCLUSION: Findings suggest the importance of undertaking culturally appropriate recruitment and retention strategies to minimise barriers and facilitate effective recruitment and retention of low-income ethnic minorities and migrants in community-based research.
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Minorias Étnicas e Raciais , Obesidade , Seleção de Pacientes , Ensaios Clínicos Controlados Aleatórios como Assunto , Migrantes , Humanos , Migrantes/estatística & dados numéricos , Migrantes/psicologia , Obesidade/prevenção & controle , Obesidade/etnologia , Minorias Étnicas e Raciais/estatística & dados numéricos , Grupos Minoritários/estatística & dados numéricos , Grupos Minoritários/psicologia , Etnicidade/estatística & dados numéricosRESUMO
OBJECTIVES: This mixed-methods systematic review aimed to identify and synthesize knowledge of the characteristics, content, and preferred format of information to support people with inflammatory arthritis (IA) to take methotrexate. METHODS: A literature search using MEDLINE, The Cochrane Library, Embase, CINAHL, PsychInfo, GreyEU, Web of Science and Open Dissertation was conducted to identify all studies published from 2000 to December 2022. Included studies detailed factors related to methotrexate (MTX) related information needs of people with inflammatory arthritis ≥ 18 years in English. Joanna Briggs Institute Guidelines (JBI) for convergent integrated mixed-methods systematic reviews were followed using validated tools for data extraction and quality. Data was analysed using reflexive thematic analysis. RESULTS: Thirteen studies (seven quantitative, two mixed-methods and four qualitative) were included involving 3425 adults, mainly female n = 2434 (71%), age 20-84 years. An overarching theme of a requirement for person-centred care was developed with three interlinking themes: 1: Accepting the need for treatment with MTX, 2: Concerns about taking MTX, 3: A need for tailored information and support. Limitations of the evidence were use of heterogeneous outcome measures and instruments to measure information needs. CONCLUSION: People with IA have individual, multi-faceted information, and support needs about MTX that are often unresolved when a one-size-fits-all approach is used. The findings can inform rheumatology training to support a person-centred approach to identifying and addressing specific needs, concerns and the development of consistent easy-to-understand accessible MTX information.
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Migrants' access and effective utilisation of settlement services depend on their level of settlement service literacy (SSL). However, SSL is multi-dimensional in nature and has many facets that are influenced by demographic and migration-related factors. Identifying factors that drive various components of SSL, and thus allowing for more focused development of specific dimensions, is critical. The aim of this study was to examine the relationship between components of SSL and migration-related and migrants' demographic factors. Using a snowball sampling approach, trained multilingual research assistants collected data on 653 participants. Data were collected using face-to-face or online (phone and via video platforms such as Zoom and Skype) surveys. Our findings suggest that demographic and migration-related factors explained 32% of the variance in overall SSL; and 17%, 23%, 44%, 8%, 10% of the variance in knowledge, empowerment, competence, community influence, and political components of SSL respectively. SSL was positively associated with pre-migration and post-migration educational attainment, being employed in Australia, being a refugee, coming from the sub-Saharan region but negatively associated with age and coming from the East Asia and Pacific region. Across SSL dimensions, post-migration education was the only factor positively associated with the overall SSL and all SSL dimensions (except the political dimension). Employment status in Australia was also positively associated with competency and empowerment, but not other dimensions. Affiliating with a religion other than Christianity or Islam was negatively associated with knowledge and empowerment whilst being a refugee was positively associated with knowledge. Age was negatively associated with the empowerment and competency dimensions. The study provides evidence of the importance of some pre- and post-migration factors that can assist in developing targeted initiatives to enhance migrants' SSL. Identifying factors that drive various components of SSL will allow for more focused development of specific dimensions and therefore is critical.
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BACKGROUND: Due to the diversity and range of services provided to humanitarian migrants during the settlement phase of migration, acquiring information across multiple service domains is intrinsic to the effective utilisation of settlement services. There are research gaps investigating how humanitarian migrants experience and navigate unfamiliar, multiple, and often complex information and service systems of host countries. This study seeks to understand the impediments to humanitarian migrants' effective utilisation of information about settlement services and to identify strategies that can be implemented to overcome these barriers. METHODS: Service providers were purposively recruited from organisations funded by the Australian Government to deliver settlement programs. The study applied an inductive thematic analysis approach to identify key themes that emerged from the data. RESULTS: From the perspective of service providers, the themed findings identified how humanitarian migrants gain knowledge about services, their information needs, information seeking practices and skills, and information specific to service domains. The findings illustrate the importance of acquiring information, knowledge, and skills across multiple information platforms and service domains as being integral to the effective utilisation of settlement services for humanitarian migrants. The study identifies systemic barriers to information and service access and suggests different strategies and approaches to improve access to context specific key information. The study identifies factors that inhibit the effectiveness of the Australian settlement service provision model and emphasises the need for targeted training of mainstream referral services. The study highlights the important role that settlement service providers play as mediators of information, adept at tailoring information to humanitarian migrants' individual and community information needs. CONCLUSION: The findings provide important insights that highlight the different roles that policymakers, researchers, and service providers can play to inform new approaches that improve the effectiveness of information and settlement service provision, as part of contributing to optimum settlement outcomes for humanitarian migrants.
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Refugiados , Migrantes , Humanos , Alfabetização , Austrália , Inquéritos e Questionários , Acessibilidade aos Serviços de SaúdeRESUMO
BACKGROUND: Obesity is an increasing health concern in Australia among adult and child populations alike and is often associated with other serious comorbidities. While the rise in the prevalence of childhood obesity has plateaued in high-income countries, it continues to increase among children from disadvantaged and culturally diverse backgrounds. The family environment of disadvantaged populations may increase the risk of childhood obesity through unhealthy eating and lifestyle practices. The Strong Families Trial aims to assess the effectiveness of a mixed behavioural and lifestyle intervention for parents and carers of at-risk populations, i.e. families from culturally diverse and disadvantaged backgrounds, in preventing unhealthy weight gain among children aged 5 to 11 years. METHODS: Eight hundred families from low socio-economic areas in Greater Western Sydney, NSW, and Melbourne, VIC, will be recruited and randomised into a lifestyle intervention or control group. The intervention comprises 90-minute weekly sessions for 6 weeks (plus two-booster sessions) of an integrated, evidence-based, parenting and lifestyle program that accounts for the influences of family functioning. Primary (anthropometric data) and secondary (family functioning, feeding related parenting, physical activity, consumption of healthy foods, health literacy, family and household costs) outcome measures will be assessed at baseline, immediately following the intervention, and 12 months post-intervention. DISCUSSION: This study will elucidate methods for engaging socially disadvantaged and culturally diverse groups in parenting programs concerned with child weight status. TRIAL REGISTRATION: This study is registered with the Australian New Zealand Clinical Trials Registry ( ACTRN12619001019190 ). Registered 16 July 2019.
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Obesidade Infantil , Adulto , Austrália/epidemiologia , Criança , Pré-Escolar , Humanos , Poder Familiar , Pais , Obesidade Infantil/prevenção & controle , Ensaios Clínicos Controlados Aleatórios como Assunto , Aumento de PesoRESUMO
BACKGROUND: Effective migration often requires supports for new arrivals, referred to as settlement services. Settlement services literacy (SSL) is key to ensuring new migrants have the capability to access and utilise the information and services designed to support the resettlement process and achieve positive settlement outcomes. To date, however, no research has sought to empirically validate measures of SSL or to assess individual migrants' levels of SSL. The aim of this study was to establish the psychometric properties of constructs from the conceptual SSL framework. DESIGN: Using a snowball sampling approach, trained multilingual research assistants collected data on 653 participants. The total sample was randomly divided into two split-half samples: one for the exploratory factor analysis (EFA; N = 324) and the other for the confirmatory factor analysis (CFA; N = 329) and scale validation. The final SSL scale included 30 questions. The full data set was used to test the nomological validity of the scale regarding whether the components of SSL impact on migrants' level of acculturative stress. RESULTS: The EFA yielded five factors: knowledge (eight items, α = 0.88), empowerment (five items, α = 0.89), competence (four items, α = 0.86), community influence (four items, α = 0.82), and political (two items, α = 0.81). In the CFA, the initial model demonstrated a poor to marginal fit model. Its re-specification by examining modification indices resulted in a good model fit: CMIN/DF = 3.07, comparative fit index = 0.92, root mean square error of approximation = 0.08 and standardised root mean square residual = 0.07, which are consistent with recommendations. All the path coefficients between the second-order construct (SSL) and its five dimensions (knowledge, empowerment, competence, community influence and political) were significant at an α = .05 level, giving evidence for the validity of different SSL dimensions. We found that SSL is significantly related to migrants' acculturative stress (ß = - 0.39, p < 0.05) in the nomological model. CONCLUSIONS: The study provides evidence of the construct validity and reliability of the SSL tool. It provides the basis for integrating the measures of SSL into evaluation of settlement services. This will allow for more effective decision-making in designing and implementing settlement services as well as funding and service agreements to address any deficiencies.
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Alfabetização , Migrantes , Análise Fatorial , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Bone marrow signal abnormalities on magnetic resonance imaging (MRI) are common in athletes. However, few studies evaluate the MRI appearance of bone marrow in the feet of ballet dancers. Our study aims to describe the "spotty bone marrow" (SBM) pattern in the tarsal bones of a cohort of ballet dancers, establishing its prevalence, distribution, potential associations, and evolution.
Methods: Eighty-six MRIs of 68 ankles in 56 ballet dancers were retrospectively reviewed for mar- row signal alterations, which were classified as focal or SBM (defined as patchy fluid-sensitive signal hyperintensity spanning more than one location or tarsal bone). When SBM involved the talus, its anatomic distribution in the bone and morphologic pattern were recorded. Additional osseous and soft tissue findings were documented. For subjects with more than one MRI of the same ankle, the SBM's evolution was monitored.
Results: Spotty bone marrow was identified in 44 ankles (65%). Spotty bone marrow was isolated to the talus (44%), present in all tarsal bones (25%), or distributed between the talus and one to three other tarsal bones (31%). In the talus, The SBM involved the entire bone (65%), the neck and body (31%), or the head and neck (4%). The SBM most commonly showed a random morphologic pattern (87%) but occasionally showed a peripheral predominance (13%). There was no statistically significant difference in the prevalence of other pathologies in ankles with and without SBM. In eight ankles with a follow-up MRI, the SBM worsened in one, remained stable in two, and improved in five ankles. None progressed to a stress fracture.
Conclusion: Spotty bone marrow is an MRI finding frequently encountered in ballet dancers. It is usually self-limiting and should not be misinterpreted as a more aggressive pathology.
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Medula Óssea/patologia , Dança , Ossos do Tarso/patologia , Medula Óssea/diagnóstico por imagem , Estudos de Coortes , Pé , Humanos , Imageamento por Ressonância Magnética/métodos , Estudos Retrospectivos , Tálus/diagnóstico por imagem , Tálus/patologia , Ossos do Tarso/diagnóstico por imagemRESUMO
Dementia is the leading cause of death in England and Wales, but traditionally it has not been considered a terminal or life-limiting condition. As a result, little significance may be placed on advance care planning (ACP) for people with dementia. Evidence suggests that most patients with advanced dementia have often not been given an opportunity to complete an advance care plan and have not had conversations with their families about their wishes and preferences at the end of life. This article reports on a literature review that aimed to explore the evidence on the introduction of ACP in achieving preferred place of care or death for people living with dementia, and reducing carer burden. The literature review found that ACP discussions have several benefits for people with dementia and their family carers, but that various factors can support or hinder such discussions. It concludes that these people and their families need to plan for end of life and suggests that ACP can increase the likelihood of achieving their preferred place of care and death and reducing decisional burden for carers.
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A coaching pilot was developed following the publication of a number of reports that recommended a review into how student nurses are taught in clinical practice. A bespoke version of the Collaborative Learning in Practice (CLiP) model was developed, which used both coaching and peer learning to encourage students to lead the delivery of care for a designated group of patients. A senior student led a team consisting of two junior students and they were given the responsibility of directing and coordinating the team in the manner expected of a registered nurse. A qualified nurse was responsible for the supervision of the students and used a coaching approach to teach. Findings from an evaluation revealed that the students benefitted from being able to work autonomously and were able to enhance their leadership and management skills.
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Docentes de Enfermagem/psicologia , Relações Interprofissionais , Tutoria/métodos , Recursos Humanos de Enfermagem/psicologia , Estudantes de Enfermagem/psicologia , Grupos Focais , Humanos , Aprendizagem , Pesquisa em Educação em Enfermagem , Pesquisa em Avaliação de Enfermagem , Pesquisa Metodológica em EnfermagemRESUMO
To meet the challenges of an increasingly ageing and multimorbid population, patients must be fully engaged to work in partnership with their health professional (HP) in the management of their condition(s). The NHS Long Term Plan (2019) outlines goals to manage the increasing demands on the health service-hospital admission avoidance, shorter length of hospital stays through enhanced recovery pathways, increased management of patients within primary care and ensuring a person-centred approach to care provision. Meeting these goals is predicated on HPs being equipped to activate patients using the skills of motivational interviewing, person-centred care and a willingness to share decision making. This article presents a range of psychological theories that could explain the everyday challenges faced in care delivery. Awareness of these theories may help HPs target their approach to care delivery more effectively, to understand patient responses and, therefore, optimise the provision of person-centred care.
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Envelhecimento , Benchmarking , Barreiras de Comunicação , Relações Enfermeiro-Paciente , Enfermagem em Saúde Comunitária , Humanos , Medicina Estatal , Reino UnidoRESUMO
Genome editing using CRISPR-Cas9 works efficiently in plant cells1, but delivery of genome-editing machinery into the vast majority of crop varieties is not possible using established methods2. We co-opted the aberrant reproductive process of haploid induction (HI)3-6 to induce edits in nascent seeds of diverse monocot and dicot species. Our method, named HI-Edit, enables direct genomic modification of commercial crop varieties. HI-Edit was tested in field and sweet corn using a native haploid-inducer line4 and extended to dicots using an engineered CENH3 HI system7. We also recovered edited wheat embryos using Cas9 delivered by maize pollen. Our data indicate that a transient hybrid state precedes uniparental chromosome elimination in maize HI. Edited haploid plants lack both the haploid-inducer parental DNA and the editing machinery. Therefore, edited plants could be used in trait testing and directly integrated into commercial variety development.
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Sistemas CRISPR-Cas/genética , Plantas Geneticamente Modificadas/genética , Sementes/genética , Zea mays/genética , Citoplasma/genética , Edição de Genes , Genoma de Planta , Haploidia , Plantas Geneticamente Modificadas/crescimento & desenvolvimento , Triticum/genética , Triticum/crescimento & desenvolvimento , Zea mays/crescimento & desenvolvimentoRESUMO
District nursing has a long history as a service that provides care for patients in their home environment. Demographic changes and a need to optimise out of hospital care has impacted on the acuity of patients supported and the complexity of caseload management. District nurses, in order to effectively manage such increased demands on their busy service, need to possess excellent, assertive case management skills. This study explores and evaluates the impact of the Specialist Practice Qualification in district nursing on the assertiveness and leadership skills of students. A mixed methods approach was adopted, utilising a quantitative assertiveness questionnaire at three points during the programme across the 12 participating higher education institutions, alongside qualitative semi-structured interviews. Statistical analysis of assertiveness scores demonstrated a statistically significant increase in scores across the duration of the programmes, with no difference related to the academic level of programme studied. Qualitative analysis demonstrated wide ranging positive impacts of the programme, including the acquisition of knowledge of underpinning theory, enhanced leadership skills and the development of a voice to truly advocate for the patient. The Specialist Practice Qualification has a dramatic impact on the professional performance of students selected to undertake the programme. The programme is frequently at risk as a result of cuts in post-registration funding. This study effectively demonstrates the substantial impact of the programme; a programme that should remain an option for future district nurses.