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Chronic granulomatous disease (CGD) is a primary immunodeficiency characterized by life-threatening infections and inflammatory conditions. Hematopoietic cell transplantation (HCT) is the definitive treatment for CGD, but questions remain regarding patient selection and impact of active disease on transplant outcomes. We performed a multi-institutional retrospective and prospective study of 391 patients with CGD treated either conventionally (non-HCT) enrolled from 2004 to 2018 or with HCT from 1996 to 2018. Median follow-up after HCT was 3.7 years with a 3-year overall survival of 82% and event-free survival of 69%. In a multivariate analysis, a Lansky/Karnofsky score <90 and use of HLA-mismatched donors negatively affected survival. Age, genotype, and oxidase status did not affect outcomes. Before HCT, patients had higher infection density, higher frequency of noninfectious lung and liver diseases, and more steroid use than conventionally treated patients; however, these issues did not adversely affect HCT survival. Presence of pre-HCT inflammatory conditions was associated with chronic graft-versus-host disease. Graft failure or receipt of a second HCT occurred in 17.6% of the patients and was associated with melphalan-based conditioning and/or early mixed chimerism. At 3 to 5 years after HCT, patients had improved growth and nutrition, resolved infections and inflammatory disease, and lower rates of antimicrobial prophylaxis or corticosteroid use compared with both their baseline and those of conventionally treated patients. HCT leads to durable resolution of CGD symptoms and lowers the burden of the disease. Patients with active infection or inflammation are candidates for transplants; HCT should be considered before the development of comorbidities that could affect performance status. This trial was registered at www.clinicaltrials.gov as #NCT02082353.
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Doença Enxerto-Hospedeiro , Doença Granulomatosa Crônica , Transplante de Células-Tronco Hematopoéticas , Humanos , Doença Granulomatosa Crônica/genética , Doença Granulomatosa Crônica/terapia , Estudos Retrospectivos , Estudos Prospectivos , Transplante Homólogo , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Genótipo , Condicionamento Pré-Transplante/efeitos adversos , Doença Enxerto-Hospedeiro/prevenção & controleRESUMO
Children are consistently not achieving recommended levels of physical activity (PA) despite it being a compulsory requirement of the national curriculum in England. Fruit and vegetable consumption also falls below recommended levels for both adults and children. With school PA increasingly being outsourced, football foundations (linked to professional football clubs) are now prominent providers of children's PA. However, research exploring coach-led interventions in schools is limited with a particular gap in knowledge surrounding the qualitative experiences of children and parents/carers. The current study therefore aimed to explore the experiences of children and parents engaged in a 6-week family football programme. Family football is a free after-school programme engaging parents/carers and their children, to enhance their engagement in PA and healthy nutritional habits. A purposive sample of parents/carers and their children (Nâ =â 36) took part in qualitative focus groups to discuss their experiences of participating in family football. Reflexive thematic analysis revealed two themes: (i) healthy lifestyle facilitators and challenges and (ii) added value of programme participation. Children discussed programme content around nutritional practices and parents/carers discussed examples of where nutritional practices had improved at home, though some parents/carers and children highlighted persistent barriers to health improvement. Both parents/carers and children reflected on how the programme had enabled them to spend dedicated time with one another. The findings emphasize the significance of direct parent/carer involvement in school-based health interventions as well as the value of coach-led interventions in the enhancement of PA enjoyment, nutritional knowledge and connectedness of families within schools.
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Exercício Físico , Futebol , Adulto , Criança , Humanos , Inglaterra , Pais , Promoção da SaúdeRESUMO
This study provides insight into an inclusive program between Special Olympics (SO) and academy football (soccer) players in the United Kingdom from the perspectives of players and facilitators. Qualitative focus groups were conducted across 30 participants (six facilitators, 14 Premier League academy players, and 10 SO players). Focus groups compared stakeholders' experiences of participating in a season-long inclusive football program. Three overarching higher order themes were generated, which highlighted positive outcomes from taking part. SO players provided endorsement for developing friendships and improving football skills, whereas academy players cited the positive impact that SO players had on their mood and motivation. Facilitators reflected on positive player outcomes and subsequent accomplishments. Overall, the findings indicated that this shared experience had psychosocial and football-specific benefits for everyone who participated. Facilitators indicated that these benefits could transition into everyday life but noted that there needs to be further considerations for future programs.
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Futebol , Humanos , AmorRESUMO
The original version of this article unfortunately contained the missing author, Caridad Martinez. The authors would like to correct the list. We apologize for any inconvenience that this may have caused. The correct author list is shown above.
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INTRODUCTION: Inflammatory bowel disease (IBD) affects approximately 1/3 of patients with chronic granulomatous disease (CGD). Comprehensive investigation of the effect of allogeneic hematopoietic cell transplantation (HCT) on CGD IBD and the impact of IBD on transplant outcomes is lacking. METHODS: We collected data retrospectively from 145 patients with CGD who had received allogeneic HCT at 26 Primary Immune Deficiency Treatment Consortium (PIDTC) centers between January 1, 2005 and June 30, 2016. RESULTS: Forty-nine CGD patients with IBD and 96 patients without IBD underwent allogeneic HCT. Eighty-nine percent of patients with IBD and 93% of patients without IBD engrafted (p = 0.476). Upper gastrointestinal acute GVHD occurred in 8.5% of patients with IBD and 3.5% of patients without IBD (p = 0.246). Lower gastrointestinal acute GVHD occurred in 10.6% of patients with IBD and 11.8% of patients without IBD (p = 0.845). The cumulative incidence of acute GVHD grades II-IV was 30% (CI 17-43%) in patients with IBD and 20% (CI 12-29%) in patients without IBD (p = 0.09). Five-year overall survival was equivalent for patients with and without IBD: 80% [CI 66-89%] and 83% [CI 72-90%], respectively (p = 0.689). All 33 surviving evaluable patients with a history of IBD experienced resolution of IBD by 2 years following allogeneic HCT. CONCLUSIONS: In this cohort, allogeneic HCT was curative for CGD-associated IBD. IBD should not contraindicate HCT, as it does not lead to an increased risk of mortality. This study is registered at clinicaltrials.gov NCT02082353.
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Doença Granulomatosa Crônica/complicações , Doença Granulomatosa Crônica/mortalidade , Transplante de Células-Tronco Hematopoéticas , Doenças Inflamatórias Intestinais/etiologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Doença Enxerto-Hospedeiro/diagnóstico , Doença Enxerto-Hospedeiro/etiologia , Doença Granulomatosa Crônica/terapia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Transplante de Células-Tronco Hematopoéticas/métodos , Humanos , Incidência , Lactente , Contagem de Leucócitos , Masculino , Neutrófilos , Prognóstico , Estudos Retrospectivos , Índice de Gravidade de Doença , Quimeras de Transplante , Transplante Homólogo , Resultado do Tratamento , Adulto JovemRESUMO
PURPOSE: To assess physical activity outcomes of a pedometer-based physically active learning (PAL) intervention in primary school children. METHODS: Six paired schools were randomly allocated to either a 6-week teacher-led pedometer-based physically active learning intervention or a control (n = 154, female = 60%, age = 9.9 [0.3] y). Accelerometers assessed total daily sedentary time, light physical activity (LPA), and moderate-to-vigorous physical activity (MVPA). Preintervention mean daily MVPA minutes grouped participants as Low Active (<45 min/d) and High Active (≥45 min/d). RESULTS: From the final sample size, the intervention (n = 52) significantly improved LPA versus control (n = 31, P = .04), by reducing sedentary time. More intervention (+10%) than control (+3%) pupils met the 60 minutes per day guidelines. In both intervention subgroups, pupils spent less time in LPA (P < .05) versus control. The greatest nonsignificant increase was found in the Low Active pupils MVPA levels. CONCLUSIONS: Improvements in LPA were statistically significant in the intervention versus control group. In subgroup analysis, Low Active pupils in the intervention showed the greatest beneficial effects and the Most Active pupils may have replaced MVPA and sedentary time with LPA. The intervention group housed clusters of pupils showing variable responsiveness, justifying routine examination of subgroup variability in future studies.
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Acelerometria , Exercício Físico , Monitores de Aptidão Física , Aprendizagem Baseada em Problemas , Criança , Feminino , Humanos , Masculino , Educação Física e Treinamento , Instituições Acadêmicas , Comportamento SedentárioRESUMO
Lung cancer is the deadliest cancer in women. In the last decade, the first measurable decline in disease-related mortality has occurred and in the last 5 years, the first decline in lung cancer incidence in women in the United States has been reported. Five-year survival rates are much higher in early-stage disease, making effective screening a priority. Data on screening with low-dose computed tomography are controversial; existing guidelines are not sex specific and recommend testing only for patients at high risk for the disease. Although cigarette smoking remains the predisposing factor that is most often associated with tumor development, the advent of molecularly targeted therapy and the growing evidence that susceptible targets are more prevalent in never-smoking women have brought more attention to this particular subpopulation. Studies of both surgery and systemic therapy suggest that not only never-smoking women but also women overall experience better outcomes than men. Identifying all of the factors contributing to these sex differences presents us with an opportunity to identify potentially a distinct tumor biology in women who would warrant a distinct personalized treatment approach.
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Neoplasias Pulmonares , Terapia Combinada , Detecção Precoce de Câncer , Feminino , Humanos , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/epidemiologia , Neoplasias Pulmonares/etiologia , Neoplasias Pulmonares/terapia , Fatores de Risco , Fatores Sexuais , Fumar/efeitos adversos , Resultado do Tratamento , Estados Unidos/epidemiologiaRESUMO
RATIONALE: Children with neurodevelopmental disorders such as attention-deficit hyperactivity disorder (ADHD), autism, developmental language disorder (DLD), intellectual disability (ID), and social (pragmatic) communication disorder (SPCD) experience difficulties with social functioning due to differences in their social, emotional and cognitive skills. Previous systematic reviews have focussed on specific aspects of social functioning rather than broader peer functioning and friendships. OBJECTIVE: To systematically review and methodologically appraise the quality and effectiveness of existing intervention studies that measured friendship outcomes for children with ADHD, autism, DLD, ID, and SPCD. METHOD: Following PRISMA guidelines, we searched five electronic databases: CINAHL, Embase, Eric, PsycINFO, and PubMed. Two independent researchers screened all abstracts and disagreements were discussed with a third researcher to reach consensus. The methodological quality of studies was assessed using the Cochrane Risk of Bias Tool for Randomised Trials. RESULTS: Twelve studies involving 15 interventions were included. Studies included 683 children with a neurodevelopmental disorder and 190 typically-developing children and diagnosed with either autism or ADHD. Within-group meta-analysis showed that the pooled intervention effects for friendship across all interventions were small to moderate (z = 2.761, p = 0.006, g = 0.485). The pooled intervention effect between intervention and comparison groups was not significant (z = 1.206, p = 0.400, g = 0.215). CONCLUSION: Findings provide evidence that some individual interventions are effective in improving social functioning and fostering more meaningful friendships between children with neurodevelopmental disorders and their peers. Effective interventions involved educators, targeted child characteristics known to moderate peer functioning, actively involved peers, and incorporated techniques to facilitate positive peer perceptions and strategies to support peers. Future research should evaluate the effectiveness of friendship interventions for children with DLD, ID and SPCD, more comprehensively assess peer functioning, include child self-report measures of friendship, and longitudinally evaluate downstream effects on friendship.
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Transtorno do Deficit de Atenção com Hiperatividade , Transtornos do Neurodesenvolvimento , Criança , Humanos , Amigos , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Grupo Associado , Ajustamento Social , Transtornos do Neurodesenvolvimento/terapiaRESUMO
In this paper, we bring together two separate studies and offer a double similitude as it were, in finding "common ground" and "common worlds" between dog-human and horse-human interactions. Appreciation of the process and mechanism of affect (and affect theory) can enable a greater understanding of child-animal interactions in how they benefit and co-constitute one another in enhancing well-being and flourishing. Studies have thus far fallen short of tapping into this significant aspect of human-animal relationships and the features of human flourishing. There has been a tendency to focus more on related biological and cognitive enhancement (lowering of blood pressure, increase in the "feel good" hormone oxytocin) such as a dog's mere "presence" in the classroom improving tests of executive function and performance. Study A details an affective methodology to explore the finer nuances of child-dog encounters. By undertaking a sensory and walking ethnography in a North East England Primary School with Year 6 (aged 10 and 11 years) and Year 4 (aged 7 and 8 years) children (60 in total), participant observation enabled rich data to emerge. Study B involves two separate groups of young people aged between 16 and 19 years who were excluded from mainstream education and identified as "vulnerable" due to perceived behavioural, social or emotional difficulties. It used mixed methods to gather and examine data from focus groups, interviews and statistics using the Rosenberg Self-Esteem Scale. Photo elicitation was an additional source of information. This equine intervention facilitated vital spaces for social and emotional well-being. The important significance of touch to children's and young people's well-being suggests a need for "spaces" in classrooms, and wider society, which open up this possibility further and challenge a "hands-off" pedagogy and professional practice.
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This research investigates whether holiday clubs have the potential to reduce food insecurity among households in the United Kingdom. We survey parents (n = 38) of children attending seven different holiday clubs to estimate the percentage of children in those programmes who come from food insecure households. Results suggest that 42% (16 out of 38 respondents) of children come from households defined as "food insecure" and 24% (9 out of 38 respondents) come from households that are "food insecure with hunger." When secure and insecure households are compared, we discover that food insecure households benefit the most from holiday clubs, which suggests that they may play an important role in mitigating household food insecurity.
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Comportamento Alimentar/psicologia , Abastecimento de Alimentos , Férias e Feriados/psicologia , Pobreza/psicologia , Criança , Estudos Transversais , Características da Família , Feminino , Humanos , Masculino , Pais , Projetos Piloto , Fatores Socioeconômicos , Reino UnidoRESUMO
Access to an adequate supply of nutritious food has been recognized as a basic human right. However, many families across the UK face food insecurity, which is thought to be exacerbated during school holidays. To address this issue, some schools and community groups have chosen to roll out holiday clubs, though research into the effectiveness of such interventions is limited and no studies to date have evaluated holiday clubs being organized through schools. In an effort to address some of the limitations in the research literature, the current qualitative investigation utilized semi-structured interviews with staff involved in holiday clubs in school and community venues with the aim of gaging their views on the need for and benefits of holiday food provision in addition to potential areas for development. The investigation revealed that staff perceived many families to be facing food insecurity and isolation during the school holidays, which may be alleviated through holiday club provision. Holiday clubs were viewed as a valuable source of support for children and adults, providing food, activities, and learning experiences. Staff were keen to see them implemented on a wider scale in future but suggested some areas that require attention in any future development of such provision. Findings are discussed in relation to current research, policy, and practice surrounding the health and wellbeing of children and families.
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Breakfast clubs are widely promoted as having a beneficial impact on children's behavior at the start of the school day, which can be conducive to their learning within the classroom. However, the few available studies that have considered the impact of breakfast club attendance on children's behavior have yielded mixed results and no studies to date have directly observed children's behavior within the breakfast club setting. Using a combination of real-time observation and filmed breakfast club footage, the aims of the current study were to: (1) devise a set of observational criteria appropriate for use in the breakfast club setting; (2) investigate the occurrence of both positive and negative behaviors. A sample of 30 children aged between 3 and 11 years were recruited from 3, opportunistically sampled primary school breakfast clubs in the North East of England, UK. The behaviors they displayed within the breakfast club setting on two separate days were observed and coded for subsequent analysis. Results of the investigation showed that children's behavior could be classified into three positive and three negative behavioral categories. Using these categories to code children's behavior as they engaged in breakfast club showed that children displayed more positive than negative behaviors within the breakfast club setting and this was the case regardless of the type of activity (i.e., quiet or boisterous) children were involved in. Findings are discussed in relation to breakfast club policy, implementation, and evaluation.
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The provision of school breakfast has become increasingly popular in the UK in recent years. However, UK-based studies highlighting the views of parents, children, and school staff on school breakfast clubs are lacking. The current study set out to address this dearth in the literature by investigating the views of these key user and stakeholder groups on breakfast clubs within the North East of England. Fourteen parents, 21 children, and 17 school staff were recruited from four primary schools where breakfast clubs were available on site. Parents and school staff took part in semistructured interviews and children participated in focus groups, through which the advantages and disadvantages of breakfast clubs were discussed. Thematic analysis revealed that breakfast clubs provided children with a settled and enjoyable start to the school day. As well as providing children with a healthy and varied breakfast meal and unique opportunities for social interaction, breakfast clubs were recognized as an integral part of the school system that offered support to parents, particularly those who worked and relied on breakfast clubs as a means of affordable and reliable childcare. The few disadvantages identified related to practical issues such as a lack of adherence to school food standards, breakfast club staff missing class preparation time and concerns that some children were being excluded from participating in breakfast clubs particularly due to costs associated with attendance. The findings are discussed in relation to the School Food Plan, and areas for further investigation are proposed.
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Across the UK, 1.3 million children access free school meals for around 38 weeks of the year. However, during school holidays, many families face considerable difficulties in providing a consistent and nutritious supply of food for their children, particularly during the extended summer break. In an effort to address this issue, a number of community-based breakfast clubs were set-up across the North West of England and in Northern Ireland where people could access a free breakfast meal during the summer holidays. Qualitative interviews were carried out with 17 children, 18 adult attendees, and 15 breakfast club staff to determine the uses and impacts associated with holiday breakfast club participation and to investigate potential areas for future development of holiday food provision. Findings highlighted a need for holiday food provision and revealed a multitude of nutritional, social, and financial benefits for those who accessed holiday breakfast clubs. Areas for further development and investigation are discussed in addition to implications for UK food and educational policies.
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The health benefits of school food have been widely promoted in recent years while the social opportunities that surround eating occasions at school have received little attention. Breakfast clubs (BCs), which take place at the start of the school day, offer a unique opportunity for children to consume a breakfast meal on their school premises in the company of their peers. Alternatively, after-school clubs (ASCs), which take place on school premises at the end of the school day, whilst also providing children with social opportunities tend to focus on sports engagement and skill development. The aim of the current paper is to investigate whether attendance at BCs and ASCs has an impact on children's friendship quality and experiences of peer victimization. BC attendees, ASC attendees, and non-attendees completed the Friendship Qualities Scale and the Multidimensional Peer Victimization Scale (MPVS) at two time points. Time-1 data were collected 2 months after the introduction of school clubs. Time-2 data were then collected on the same measures again 6 months later. Results of the analyses of Time-1 data showed no significant differences between groups on any of the measures at Time-1. However, at Time-2, BC attendees showed improved levels of friendship quality compared to the other two groups. Moreover, analysis of the MPVS data at Time-2 showed that children who attended BC or ASC experienced a decline in victimization across time. The current findings suggest that BC attendance facilitates the quality of children's relationships with their best friend over time. Additionally, attendance at a breakfast or ASC was associated with a reduction in victimization over time. The results have implications for utilization of breakfast and ASCs to aid children's social relationships in school over time.