RESUMO
AIM: The aim was to examine the quality of online patient information resources for patients considering parastomal hernia treatment. METHODS: A Google search was conducted using lay search terms for patient facing sources on parastomal hernia. The quality of the content was assessed using the validated DISCERN instrument. Readability of written content was established using the Flesch-Kincaid score. Sources were also assessed against the essential content and process standards from the National Institute for Health and Care Excellence (NICE) framework for shared decision making support tools. Content analysis was also undertaken to explore what the sources covered and to identify any commonalities across the content. RESULTS: Fourteen sources were identified and assessed using the identified tools. The mean Flesch-Kincaid reading ease score was 43.61, suggesting that the information was difficult to read. The overall quality of the identified sources was low based on the pooled analysis of the DISCERN and Flesch-Kincaid scores, and when assessed against the criteria in the NICE standards framework for shared decision making tools. Content analysis identified eight categories encompassing 59 codes, which highlighted considerable variation between sources. CONCLUSIONS: The current information available to patients considering parastomal hernia treatment is of low quality and often does not contain enough information on treatment options for patients to be able to make an informed decision about the best treatment for them. There is a need for high-quality information, ideally co-produced with patients, to provide patients with the necessary information to allow them to make informed decisions about their treatment options when faced with a symptomatic parastomal hernia.
Assuntos
Internet , Educação de Pacientes como Assunto , Humanos , Informação de Saúde ao Consumidor/normas , Estomas Cirúrgicos/efeitos adversos , Hérnia Incisional/cirurgia , Compreensão , HerniorrafiaRESUMO
ALK is the most commonly mutated oncogene in neuroblastoma with increased mutation frequency reported at relapse. Here we report the loss of an ALK mutation in two patients at relapse and a paired neuroblastoma cell line at relapse. ALK detection methods including Sanger sequencing, targeted next-generation sequencing and a new ALK Agena MassARRAY technique were used to detect common hotspot ALK variants in tumors at diagnosis and relapse from two high-risk neuroblastoma patients. Copy number analysis including single nucleotide polymorphism array and array comparative genomic hybridization confirmed adequate tumor cell content in DNA used for mutation testing. Case 1 presented with an ALK F1174L mutation at diagnosis with a variant allele frequency (VAF) ranging between 23.5% and 28.5%, but the mutation was undetectable at relapse. Case 2 presented with an ALK R1257Q mutation at diagnosis (VAF = 39%-47.4%) which decreased to <0.01% at relapse. Segmental chromosomal aberrations were maintained between diagnosis and relapse confirming sufficient tumor cell content for mutation detection. The diagnostic SKNBE1n cell line harbors an ALK F1174S mutation, which was lost in the relapsed SKNBE2c cell line. To our knowledge, these are the first reported cases of loss of ALK mutations at relapse in neuroblastoma in the absence of ALK inhibitor therapy, reflecting intra-tumoral spatial and temporal heterogeneity. As ALK inhibitors are increasingly used in the treatment of refractory/relapsed neuroblastoma, our study highlights the importance of confirming whether an ALK mutation detected at diagnosis is still present in clones leading to relapse.
Assuntos
Quinase do Linfoma Anaplásico , Neuroblastoma , Receptores Proteína Tirosina Quinases , Quinase do Linfoma Anaplásico/genética , Hibridização Genômica Comparativa , Humanos , Mutação , Recidiva Local de Neoplasia/genética , Neuroblastoma/patologia , Inibidores de Proteínas Quinases , Receptores Proteína Tirosina Quinases/genéticaRESUMO
BACKGROUND: People with chronic conditions experience functional impairment, lower quality of life, and greater economic hardship and poverty. Social isolation and loneliness are common for people with chronic conditions, with multiple co-occurring chronic conditions predicting an increased risk of loneliness. Peer support is a socially driven intervention involving people with lived experience of a condition helping others to manage the same condition, potentially offering a sense of connectedness and purpose, and experiential knowledge to manage disease. However, it is unclear what outcomes are important to patients across the spectrum of chronic conditions, what works and for whom. The aims of this review were to (1) collate peer support intervention components, (2) collate the outcome domains used to evaluate peer support, (3) synthesise evidence of effectiveness, and (4) identify the mechanisms of effect, for people with chronic conditions. METHODS: A systematic review of reviews was conducted. Reviews were included if they reported on formal peer support between adults or children with one or more chronic condition. Data were analysed using narrative synthesis. RESULTS: The search identified 6222 unique publications. Thirty-one publications were eligible for inclusion. Components of peer support were organised into nine categories: social support, psychological support, practical support, empowerment, condition monitoring and treatment adherence, informational support, behavioural change, encouragement and motivation, and physical training. Fifty-five outcome domains were identified. Quality of life, and self-efficacy were the most measured outcome domains identified. Most reviews reported positive but non-significant effects. CONCLUSIONS: The effectiveness of peer support is unclear and there are inconsistencies in how peers are defined, a lack of clarity in research design and intervention reporting, and widely variable outcome measurement. This review presents a range of components of peer support interventions that may be of interest to clinicians developing new support programmes. However, it is unclear precisely what components to use and with whom. Therefore, implementation of support in different clinical settings may benefit from participatory action research so that services may reflect local need.
Assuntos
Aconselhamento , Qualidade de Vida , Adulto , Criança , Exercício Físico , Humanos , Grupo Associado , Apoio SocialRESUMO
BACKGROUND: Peer support work roles are being implemented internationally, and increasingly in lower-resource settings. However, there is no framework to inform what types of modifications are needed to address local contextual and cultural aspects. AIMS: To conduct a systematic review identifying a typology of modifications to peer support work for adults with mental health problems. METHOD: We systematically reviewed the peer support literature following PRISMA guidelines for systematic reviews (registered on PROSPERO (International Prospective Register of Systematic Reviews) on 24 July 2018: CRD42018094832). All study designs were eligible and studies were selected according to the stated eligibility criteria and analysed with standardised critical appraisal tools. A narrative synthesis was conducted to identify types of, and rationales for modifications. RESULTS: A total of 15 300 unique studies were identified, from which 39 studies were included with only one from a low-resource setting. Six types of modifications were identified: role expectations; initial training; type of contact; role extension; workplace support for peer support workers; and recruitment. Five rationales for modifications were identified: to provide best possible peer support; to best meet service user needs; to meet organisational needs, to maximise role clarity; and to address socioeconomic issues. CONCLUSIONS: Peer support work is modified in both pre-planned and unplanned ways when implemented. Considering each identified modification as a candidate change will lead to a more systematic consideration of whether and how to modify peer support in different settings. Future evaluative research of modifiable versus non-modifiable components of peer support work is needed to understand the modifications needed for implementation among different mental health systems and cultural settings.
Assuntos
Transtornos Mentais/psicologia , Grupo Associado , Apoio Social , Trabalho/psicologia , Adulto , HumanosRESUMO
PURPOSE: The evidence base for peer support work in mental health is established, yet implementation remains a challenge. The aim of this systematic review was to identify influences which facilitate or are barriers to implementation of mental health peer support work. METHODS: Data sources comprised online databases (n = 11), journal table of contents (n = 2), conference proceedings (n = 18), peer support websites (n = 2), expert consultation (n = 38) and forward and backward citation tracking. Publications were included if they reported on implementation facilitators or barriers for formal face-to-face peer support work with adults with a mental health problem, and were available in English, French, German, Hebrew, Luganda, Spanish or Swahili. Data were analysed using narrative synthesis. A six-site international survey [Germany (2 sites), India, Israel, Tanzania, Uganda] using a measure based on the strongest influences was conducted. The review protocol was pre-registered (Prospero: CRD42018094838). RESULTS: The search strategy identified 5813 publications, of which 53 were included. Fourteen implementation influences were identified, notably organisational culture (reported by 53% of papers), training (42%) and role definition (40%). Ratings on a measure using these influences demonstrated preliminary evidence for the convergent and discriminant validity of the identified influences. CONCLUSION: The identified influences provide a guide to implementation of peer support. For services developing a peer support service, organisational culture including role support (training, role clarity, resourcing and access to a peer network) and staff attitudes need to be considered. The identified influences provide a theory base to prepare research sites for implementing peer support worker interventions.
Assuntos
Aconselhamento , Saúde Mental , Grupo Associado , Adulto , Atitude do Pessoal de Saúde , Alemanha , Humanos , Índia , Israel , Serviços de Saúde Mental , Inquéritos e Questionários , Tanzânia , UgandaRESUMO
OBJECTIVE: To develop a manualised psychological treatment for tinnitus that could enhance audiologist usual care, and to test feasibility of evaluating it in a randomised controlled trial. DESIGN: Feasibility trial, random allocation of patients to manualised treatment or treatment as usual, and mixed-methods evaluation. Study sample: Senior audiologists, and adults with chronic tinnitus. RESULTS: Recruitment reached 63% after 6 months (feasibility pre-defined as 65%). Only nine patients (47%) were retained for the duration of the trial. Patients reported that the treatment was acceptable and helped reassure them about their tinnitus. Audiologists reported mixed feelings about the kinds of techniques that are presented to them as 'psychologically informed'. Audiologists also reported lacking confidence because the training they had was brief, and stated that more formal supervision would have been helpful to check adherence to the treatment manual. CONCLUSIONS: The study indicate potential barriers to audiologist use of the manual, and that a clinical trial of the intervention is not yet feasible. However, positive indications from outcome measures suggest that further development work would be worthwhile. Refinements to the manual are indicated, and training and supervision arrangements to better support audiologists to use the intervention in the clinic are required. Trial Registration: ISRCTN13059163.
Assuntos
Audiologistas , Zumbido , Adulto , Estudos de Viabilidade , Humanos , Zumbido/diagnóstico , Zumbido/terapiaRESUMO
OBJECTIVES: The aim of this study was to determine which components of psychological therapies are most important and appropriate to inform audiologists' usual care for people with tinnitus. DESIGN: A 39-member panel of patients, audiologists, hearing therapists, and psychologists completed a three-round Delphi survey to reach consensus on essential components of audiologist-delivered psychologically informed care for tinnitus. RESULTS: Consensus (≥80% agreement) was reached on including 76 of 160 components. No components reached consensus for exclusion. The components reaching consensus were predominantly common therapeutic skills such as Socratic questioning and active listening, rather than specific techniques, for example, graded exposure therapy or cognitive restructuring. Consensus on educational components to include largely concerned psychological models of tinnitus rather than neurophysiological information. CONCLUSIONS: The results of this Delphi survey provide a tool to develop audiologists' usual tinnitus care using components that both patients and clinicians agree are important and appropriate to be delivered by an audiologist for adults with tinnitus-related distress. Research is now necessary to test the added effects of these components when delivered by audiologists.
Assuntos
Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Psicoterapia , Zumbido/psicologia , Audiologistas , Consenso , Técnica Delphi , Humanos , Psicologia , Medicina Estatal , Zumbido/terapia , Reino UnidoRESUMO
BACKGROUND: Tinnitus is associated with depression and anxiety disorders, severely and adversely affecting the quality of life and functional health status for some people. With the dearth of clinical psychologists embedded in audiology services and the cessation of training for hearing therapists in the UK, it is left to audiologists to meet the psychological needs of many patients with tinnitus. However, there is no universally standardized training or manualized intervention specifically for audiologists across the whole UK public healthcare system and similar systems elsewhere across the world. OBJECTIVES: The primary aim of this scoping review was to catalog the components of psychological therapies for people with tinnitus, which have been used or tested by psychologists, so that they might inform the development of a standardized audiologist-delivered psychological intervention. Secondary aims of this article were to identify the types of psychological therapy for people with tinnitus, who were reported but not tested in any clinical trial, as well as the job roles of clinicians who delivered psychological therapy for people with tinnitus in the literature. DESIGN: The authors searched the Cochrane Ear, Nose and Throat Disorders Group Trials Register; Cochrane Central Register of Controlled Trials; PubMed; EMBASE; CINAHL; LILACS; KoreaMed; IndMed; PakMediNet; CAB Abstracts; Web of Science; BIOSIS Previews; ISRCTN; ClinicalTrials.gov; IC-TRP; and Google Scholar. In addition, the authors searched the gray literature including conference abstracts, dissertations, and editorials. No records were excluded on the basis of controls used, outcomes reached, timing, setting, or study design (except for reviews-of the search results. Records were included in which a psychological therapy intervention was reported to address adults (≤18 years) tinnitus-related distress. No restrictive criteria were placed upon the term tinnitus. Records were excluded in which the intervention included biofeedback, habituation, hypnosis, or relaxation as necessary parts of the treatment. RESULTS: A total of 5043 records were retrieved of which 64 were retained. Twenty-five themes of components that have been included within a psychological therapy were identified, including tinnitus education, psychoeducation, evaluation treatment rationale, treatment planning, problem-solving behavioral intervention, thought identification, thought challenging, worry time, emotions, social comparison, interpersonal skills, self-concept, lifestyle advice, acceptance and defusion, mindfulness, attention, relaxation, sleep, sound enrichment, comorbidity, treatment reflection, relapse prevention, and common therapeutic skills. The most frequently reported psychological therapies were cognitive behavioral therapy, tinnitus education, and internet-delivered cognitive behavioral therapy. No records reported that an audiologist delivered any of these psychological therapies in the context of an empirical trial in which their role was clearly delineated from that of other clinicians. CONCLUSIONS: Scoping review methodology does not attempt to appraise the quality of evidence or synthesize the included records. Further research should therefore determine the relative importance of these different components of psychological therapies from the perspective of the patient and the clinician.
Assuntos
Terapia Cognitivo-Comportamental/métodos , Zumbido/terapia , Transtornos de Ansiedade/psicologia , Transtornos de Ansiedade/terapia , Transtorno Depressivo/psicologia , Transtorno Depressivo/terapia , Humanos , Educação de Pacientes como Assunto/métodos , Psicoterapia/métodos , Zumbido/psicologiaRESUMO
Concentrations of glyphosate observed in the environment are generally lower than those found to exert toxicity on aquatic organisms in the laboratory. Toxicity is often tested in the absence of other expected co-occurring contaminants. By examining changes in the phytoplankton and zooplankton communities of shallow, partitioned wetlands over a 5 month period, we assessed the potential for direct and indirect effects of the glyphosate-based herbicide, Roundup WeatherMax(©) applied at the maximum label rate, both in isolation and in a mixture with nutrients (from fertilizers). The co-application of herbicide and nutrients resulted in an immediate but transient decline in dietary quality of phytoplankton (8.3 % decline in edible carbon content/L) and zooplankton community similarity (27 % decline in similarity and loss of three taxa), whereas these effects were not evident in wetlands treated only with the herbicide. Thus, even at a worst-case exposure, this herbicide in isolation, did not produce the acutely toxic effects on plankton communities suggested by laboratory or mesocosm studies. Indirect effects of the herbicide-nutrient mixture were evident in mid-summer, when glyphosate residues were no longer detectable in surface water. Zooplankton abundance tripled, and zooplankton taxa richness increased by an average of four taxa in the herbicide and nutrient treated wetlands. The lack of significant toxicity of Roundup WeatherMax alone, as well as the observation of delayed interactive or indirect effects of the mixture of herbicide and nutrients attest to the value of manipulative field experiments as part of a comprehensive, tiered approach to risk assessments in ecotoxicology.
Assuntos
Agricultura , Monitoramento Ambiental , Glicina/análogos & derivados , Herbicidas/toxicidade , Fitoplâncton/efeitos dos fármacos , Poluentes Químicos da Água/toxicidade , Zooplâncton/efeitos dos fármacos , Animais , Ecossistema , Glicina/toxicidade , Nitrogênio/toxicidade , Fósforo/toxicidade , Fitoplâncton/fisiologia , Áreas Alagadas , Zooplâncton/fisiologia , GlifosatoRESUMO
Herbicides and fertilizers are widely used throughout the world and pose a threat to aquatic ecosystems. Using a replicated, whole ecosystem experiment in which 24 small wetlands were split in half with an impermeable barrier we tested whether exposure to a glyphosate-based herbicide, Roundup WeatherMax™, alone or in combination with nutrient enrichment has an effect on the survival, growth or development of amphibians. The herbicide was applied at one of two concentrations (low=210 µg a.e./L, high=2880 µg a.e./L) alone and in combination with nutrient enrichment to one side of wetlands and the other was left as an untreated control. Each treatment was replicated with six wetlands, and the experiment was repeated over two years. In the high glyphosate and nutrient enrichment treatment the survival of wood frog (Lithobates sylvaticus) larvae was lower in enclosures placed in situ on the treated sides than the control sides of wetlands. However, these results were not replicated in the second year of study and they were not observed in free swimming wood frog larvae in the wetlands. In all treatments, wood frog larvae on the treated sides of wetlands were slightly larger (<10%) than those on the control side, but no effect on development was observed. The most dramatic finding was that the abundance of green frog larvae (Lithobates clamitans) was higher on the treated sides than the control sides of wetlands in the herbicide and nutrient treatments during the second year of the study. The results observed in this field study indicate that caution is necessary when extrapolating results from artificial systems to predict effects in natural systems. In this experiment, the lack of toxicity to amphibian larvae was probably due to the fact the pH of the wetlands was relatively low and the presence of sediments and organic surfaces which would have mitigated the exposure duration.
Assuntos
Ecossistema , Glicina/análogos & derivados , Crescimento e Desenvolvimento/efeitos dos fármacos , Herbicidas/toxicidade , Rana clamitans/fisiologia , Poluentes Químicos da Água/toxicidade , Animais , Glicina/toxicidade , Larva/efeitos dos fármacos , Análise de Sobrevida , GlifosatoRESUMO
BACKGROUND: Group 3 medulloblastoma (MBGRP3) represents around 25% of medulloblastomas and is strongly associated with c-MYC (MYC) amplification, which confers significantly worse patient survival. Although elevated MYC expression is a significant molecular feature in MBGRP3, direct targeting of MYC remains elusive, and alternative strategies are needed. The metabolic landscape of MYC-driven MBGRP3 is largely unexplored and may offer novel opportunities for therapies. METHODS: To study MYC-induced metabolic alterations in MBGRP3, we depleted MYC in isogenic cell-based model systems, followed by 1H high-resolution magic-angle spectroscopy (HRMAS) and stable isotope-resolved metabolomics, to assess changes in intracellular metabolites and pathway dynamics. RESULTS: Steady-state metabolic profiling revealed consistent MYC-dependent alterations in metabolites involved in one-carbon metabolism such as glycine. 13C-glucose tracing further revealed a reduction in glucose-derived serine and glycine (de novo synthesis) following MYC knockdown, which coincided with lower expression and activity of phosphoglycerate dehydrogenase (PHGDH), the rate-limiting enzyme in this pathway. Furthermore, MYC-overexpressing MBGRP3 cells were more vulnerable to pharmacological inhibition of PHGDH compared to those with low expression. Using in vivo tumor-bearing genetically engineered and xenograft mouse models, pharmacological inhibition of PHGDH increased survival, implicating the de novo serine/glycine synthesis pathway as a pro-survival mechanism sustaining tumor progression. Critically, in primary human medulloblastomas, increased PHGDH expression correlated strongly with both MYC amplification and poorer clinical outcomes. CONCLUSIONS: Our findings support a MYC-induced dependency on the serine/glycine pathway in MBGRP3 that represents a novel therapeutic treatment strategy for this poor prognosis disease group.
RESUMO
OBJECTIVE: Mental health problems are a leading and increasing cause of health-related burden in children across the world. Peer support interventions are increasingly used to meet this need using the lived experience of people with a history of mental health problems. However, much of the research underpinning this work has focused on adults, leaving a gap in knowledge about how these complex interventions may work for different children in different circumstances. Realist research may help us to understand how such complex interventions may trigger different mechanisms to produce different outcomes in children. This paper reports on an important first step in realist research, namely the construction of an embryonic initial programme theory to help 'focus' realist evaluation exploring how children's peer support services work in different contexts to produce different outcomes in the West Midlands (UK). METHODS: A survey and preliminary semi-structured realist interviews were conducted with 10 people involved in the delivery of peer support services. Realist analysis was carried out to produce context-mechanism-outcome configurations (CMOC). RESULTS: Analysis produced an initial programme theory of peer support for children's mental health. This included 12 CMOCs. Important outcomes identified by peer support staff included hope, service engagement, wellbeing, resilience, and confidence; each generated by different mechanisms including contextualisation of psychoeducation, navigating barriers to accessing services, validation, skill development, therapeutic relationship, empowerment, and reducing stigma. CONCLUSION: These data lay the groundwork for designing youth mental health realist research to evaluate with nuance the complexities of what components of peer support work for whom in varying circumstances.
RESUMO
Here, we present a protocol for deriving a continuum score for group 3 and 4 medulloblastoma tumor samples analyzed via RNA-sequencing or DNA methylation microarray. We describe steps for utilizing NMF-defined group 3/group 4 metagenes to calculate a continuum score between 0 and 1 that can be projected onto new sample data analyzed via RNA-sequencing. We then detail procedures for reverse engineering a continuum score for samples analyzed via DNA methylation microarray using a random forest classifier.
Assuntos
Neoplasias Cerebelares , Meduloblastoma , Humanos , Metilação de DNA/genética , Meduloblastoma/diagnóstico , Meduloblastoma/genética , Meduloblastoma/patologia , Neoplasias Cerebelares/diagnóstico , Neoplasias Cerebelares/genética , Neoplasias Cerebelares/patologia , Sequência de Bases , RNARESUMO
Medulloblastoma, the most common malignant pediatric brain tumor, often harbors MYC amplifications. Compared to high-grade gliomas, MYC-amplified medulloblastomas often show increased photoreceptor activity and arise in the presence of a functional ARF/p53 suppressor pathway. Here, we generate an immunocompetent transgenic mouse model with regulatable MYC that develop clonal tumors that molecularly resemble photoreceptor-positive Group 3 medulloblastoma. Compared to MYCN-expressing brain tumors driven from the same promoter, pronounced ARF silencing is present in our MYC-expressing model and in human medulloblastoma. While partial Arf suppression causes increased malignancy in MYCN-expressing tumors, complete Arf depletion promotes photoreceptor-negative high-grade glioma formation. Computational models and clinical data further identify drugs targeting MYC-driven tumors with a suppressed but functional ARF pathway. We show that the HSP90 inhibitor, Onalespib, significantly targets MYC-driven but not MYCN-driven tumors in an ARF-dependent manner. The treatment increases cell death in synergy with cisplatin and demonstrates potential for targeting MYC-driven medulloblastoma.
Assuntos
Neoplasias Encefálicas , Neoplasias Cerebelares , Glioma , Meduloblastoma , Proteínas Proto-Oncogênicas c-myc , Animais , Criança , Humanos , Camundongos , Camundongos Transgênicos , Proteína Proto-Oncogênica N-MycRESUMO
AIM: To examine public perspectives on lateral flow testing (LFT) for COVID-19. DESIGN: Online survey with nested semi-structured interviews. SETTING: Birmingham, UK. PARTICIPANTS: 220 Birmingham residents, 21 of whom took part in an interview. RESULTS: Fifty-six per cent of respondents had taken an LFT. Reasons for not testing included adherence to other government COVID-19 guidance, having had a vaccination and not thinking LFTs were accurate. In 16% of households with children nobody, including children, was testing. In households where children were testing, their parents or other adults were often not. Those who were testing and eligible for workplace and school testing were more likely to be testing twice weekly. In other settings, respondents were more likely to be testing on a one-off or ad hoc basis. Approximately half of respondents said that they were likely to visit friends and family after a negative test result and 10% that they were unlikely to self-isolate following a positive test result. In interviews, participants who were testing described the peace of mind that testing afforded them prior to activities or interactions with family and friends, including those they considered to be vulnerable. Interviewees who were not testing described concerns about test accuracy and also cited a lack of face-to-face interaction with others precluding the need to test. Participants were often testing flexibly according to circumstances and perceived risk of COVID-19 transmission. CONCLUSIONS: While some choose not to test, others are doing so in order to provide peace of mind to engage in personal interactions they might otherwise have avoided. This peace of mind may be a necessary pre-requisite for some to more fully re-engage in pre-pandemic activities. Despite clear concerns about test accuracy among those not testing, those who are testing held generally positive attitudes towards the continued use of LFTs.
Assuntos
COVID-19 , Adulto , COVID-19/diagnóstico , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Humanos , Pesquisa Qualitativa , SARS-CoV-2 , Inquéritos e Questionários , Reino UnidoRESUMO
OBJECTIVE: Paediatric burn injuries present physical and psychosocial effects for children and their parents, including disruption to family life. Some burns services in the UK enable parents to administer dressing changes at home to reduce the number of hospital visits. To date, there is no research on parents' experiences of administering dressing changes. The aim of this study was to describe parents' experiences of administering dressing changes in paediatric burns aftercare. METHODS: Semi-structured research interviews were conducted with a purposive sample of parents recruited from a paediatric burns centre in the UK. The interview addressed the initial offer of at-home dressing changes by clinicians; parental decision-making in relation to dressing changes; training and support received; and the experience of administering dressing changes, including practical and emotional considerations. Thematic analysis of the data was informed by the framework approach, including associative analysis using demographic and clinical characteristics. RESULTS: Seventeen participants were interviewed. Three themes of parents' experiences of administering dressing changes were identified including (1) Parental Identity concerning the newly undertaken responsibility and the impact on the parental role; (2) Challenges, physical or emotional, confronted or lessened by administering dressing changes; and (3) Reassurance provided by healthcare professionals and others to support parents to adopt and maintain parent-administered dressing changes. CONCLUSION: The qualitative data reported here indicates that parents want to be involved in their child's care by administering dressing changes at home, provided they receive sufficient reassurance that they are able to manage the severity of their child's burn. Parents' concerns about the effectiveness of their dressing changes lacks empirical basis, and this study provides preliminary data to support the development and evaluation of best practice guidance for parent-administered dressing changes in paediatric burns aftercare.
Assuntos
Assistência ao Convalescente , Queimaduras , Bandagens , Queimaduras/terapia , Criança , Humanos , Pais/psicologia , Pesquisa QualitativaRESUMO
BACKGROUND: The support provided by people with the same condition, including inflammatory bowel diseases (IBD), has the potential to improve a range of psychosocial outcomes by allowing people with the disease to receive emotional support as well as to learn coping strategies from more experienced peers. The aim of this systematic review was to summarise the evidence on peer support interventions and their effectiveness on people with IBD. METHODS: Bibliographic databases, conference proceedings, grey literature, and clinical trial registers were searched from inception to November 2021. Comparative and single-arm studies that evaluated interventions that were solely or contained in part peer support, for people with IBD and/or their carers of any age and in any setting were included. Effectiveness was evaluated using outcomes relating to physical and psychosocial function, disease control and healthcare utilisation. Data for each outcome were tabulated and presented in a narrative synthesis. Study design specific tools were used to assess risk of bias. Study selection and risk of bias assessment were undertaken by two reviewers independently. RESULTS: Fourteen completed studies and five ongoing studies met the inclusion criteria. Substantial heterogeneity was observed in the studies in relation to the intervention type and peer support was usually part of a wider intervention. All but one study analysed the total effect of the intervention, so it was not possible to fully isolate the effect of the peer support alone. The appropriateness of outcomes and outcome measurement tools for the assessment of effects was a further key issue. As such, overall, no significant evidence of beneficial effects of peer support interventions on quality of life and other psychosocial outcomes was found. CONCLUSIONS: New randomised controlled trials designed to isolate the effects of peer support are needed to evaluate the (net) effects of peer support only. Agreement on the outcomes to be targeted, and the choice of reliable and validated measurement tools for standalone peer support interventions would provide a focus for further intervention design and evaluation. SYSTEMATIC REVIEW REGISTRATION: The protocol was accepted in the international prospective register of systematic reviews (PROSPERO CRD42020168817).
Assuntos
Cuidadores , Doenças Inflamatórias Intestinais , Cuidadores/psicologia , Doença Crônica , Humanos , Doenças Inflamatórias Intestinais/terapia , Qualidade de Vida/psicologiaRESUMO
OBJECTIVE: Following paediatric burn injury, dressings are initially changed in outpatient clinics, necessitating regular visits with substantial burden for parents, children and services. This can potentially be lessened if some parents go on to administer dressing changes for their child at home. However, a lack of data regarding support for parent-administered dressing changes is present. The aim of this study was to describe current practice and views regarding at-home parent-administered dressing changes (PAD) in the UK. METHODS: An online survey was distributed to 20 paediatric burns services in England and Wales. The survey used fixed and free-text responses to collect data on whether PAD is offered and the reasons for this; patient and parent eligibility criteria; training and support; and respondents?" views on the advantages and disadvantages of PAD. Analysis comprised simple descriptive statistics and simple content analysis of free-text responses. RESULTS: Thirteen responses were received (response rate = 65%). Eleven respondents indicated their service offers PAD. Two respondents reported their service does not offer PAD due to alternative nurse outreach appointments (n = 1), and service resource limitations (n = 1), though another respondent indicated service cost savings. Twelve respondents regard PAD positively (n = 8) or very positively (n = 4). Most respondents reported that 10% or fewer parents refuse PAD when offered (n = 7). Perceived advantages of PAD included reduced travel burden (n = 9), patient better able to cope with dressing changes (n = 8), better school and work attendance for child and parent respectively (n = 6), and reduced financial impact on families (n = 4). No formal eligibility criteria for PAD are extant, though 5 respondents described informal criteria in place in their service, predominantly involving dressing frequency (n = 5), and size or complexity of wound (n = 4). CONCLUSION: The survey indicates that most paediatric burns services support PAD. However, the absence of formal eligibility criteria, and informal criteria open to interpretation, risks inequity of support received by children and their families. Further research should evaluate whether this inequity extends to variable clinical outcomes to determine what works for who and under what circumstances when supporting parents in paediatric burns aftercare.
Assuntos
Assistência ao Convalescente , Queimaduras , Bandagens , Queimaduras/terapia , Criança , Humanos , Pais , Inquéritos e QuestionáriosRESUMO
LncRNAs are involved in regulatory processes in the human genome, including gene expression. The rs35705950 SNP, previously associated with IPF, overlaps with the recently annotated lncRNA AC061979.1, a 1712 nucleotide transcript located within the MUC5B promoter at chromosome 11p15.5. To document the expression pattern of the transcript, we processed 3.9 TBases of publicly available RNA-SEQ data across 27 independent studies involving lung airway epithelial cells. Epithelial lung cells showed expression of this putative pancRNA. The findings were independently validated in cell lines and primary cells. The rs35705950 is found within a conserved region (from fish to primates) within the expressed sequence indicating functional importance. These results implicate the rs35705950-containing AC061979.1 pancRNA as a novel component of the MUC5B expression control minicircuitry.
RESUMO
The non-target effects of an azadirachtin-based systemic insecticide used for control of wood-boring insect pests in trees were assessed on litter-dwelling earthworms, leaf-shredding aquatic insects, and microbial communities in terrestrial and aquatic microcosms. The insecticide was injected into the trunks of ash trees at a rate of 0.2 gazadirachtin cm(-1) tree diameter in early summer. At the time of senescence, foliar concentrations in most (65%) leaves where at or below detection (<0.01 mg kg(-1) total azadirachtin) and the average concentration among leaves overall at senescence was 0.19 mg kg(-1). Leaves from the azadirachtin-treated trees at senescence were added to microcosms and responses by test organisms were compared to those in microcosms containing leaves from non-treated ash trees (controls). No significant reductions were detected among earthworm survival, leaf consumption rates, growth rates, or cocoon production, aquatic insect survival and leaf consumption rates, and among terrestrial and aquatic microbial decomposition of leaf material in comparison to controls. In a further set of microcosm tests containing leaves from intentional high-dose trees, the only significant, adverse effect detected was a reduction in microbial decomposition of leaf material, and only at the highest test concentration (â¼6 mg kg(-1)). Results indicated no significant adverse effects on litter-dwelling earthworms or leaf-shredding aquatic insects at concentrations up to at least 30 × the expected field concentrations at operational rates, and at 6 × expected field concentrations for adverse effects on microbial decomposition. We conclude that when azadirachtin is used as a systemic insecticide in trees for control of insect pests such as the invasive wood-boring beetle, emerald ash borer, resultant foliar concentrations in senescent leaf material are likely to pose little risk of harm to decomposer invertebrates.