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BACKGROUND: Many male prisoners have significant mental health problems, including anxiety and depression. High proportions struggle with homelessness and substance misuse. AIMS: This study aims to evaluate whether the Engager intervention improves mental health outcomes following release. METHOD: The design is a parallel randomised superiority trial that was conducted in the North West and South West of England (ISRCTN11707331). Men serving a prison sentence of 2 years or less were individually allocated 1:1 to either the intervention (Engager plus usual care) or usual care alone. Engager included psychological and practical support in prison, on release and for 3-5 months in the community. The primary outcome was the Clinical Outcomes in Routine Evaluation Outcome Measure (CORE-OM), 6 months after release. Primary analysis compared groups based on intention-to-treat (ITT). RESULTS: In total, 280 men were randomised out of the 396 who were potentially eligible and agreed to participate; 105 did not meet the mental health inclusion criteria. There was no mean difference in the ITT complete case analysis between groups (92 in each arm) for change in the CORE-OM score (1.1, 95% CI -1.1 to 3.2, P = 0.325) or secondary analyses. There were no consistent clinically significant between-group differences for secondary outcomes. Full delivery was not achieved, with 77% (108/140) receiving community-based contact. CONCLUSIONS: Engager is the first trial of a collaborative care intervention adapted for prison leavers. The intervention was not shown to be effective using standard outcome measures. Further testing of different support strategies for prison with mental health problems is needed.
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Saúde Mental , Prisioneiros , Masculino , Humanos , Análise Custo-Benefício , Ansiedade , InglaterraRESUMO
BACKGROUND: Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer-led group-based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID-19. METHODS: The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context. RESULTS: This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co-created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll-out of the programme with other delivery partner organisations. CONCLUSIONS: This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes. PATIENT AND PUBLIC CONTRIBUTION: Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research.
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COVID-19 , Crianças com Deficiência , Criança , Humanos , Cuidadores , Avaliação de Programas e Projetos de Saúde , PaisRESUMO
RATIONALE & OBJECTIVE: Benefits of sodium-glucose cotransporter 2 inhibitors on kidney outcomes have been demonstrated in clinical trials. Among patients with type 2 diabetes and established cardiovascular (CV) disease enrolled in the EMPA-REG OUTCOME study (ClinicalTrials.gov identifier NCT01131676), empagliflozin added to standard of care (SOC) reduced the risk of incident or worsening nephropathy compared with SOC alone. This analysis evaluated the cost-effectiveness of empagliflozin versus SOC alone in the subpopulation with diabetic kidney disease (DKD) from the perspective of US commercial insurers and Medicare. STUDY DESIGN: Discrete event simulation model. SETTING & POPULATION: Patients with DKD in a US health care system. INTERVENTIONS: Empagliflozin 10 or 25mg with SOC versus SOC alone. SOC included glucose-lowering therapies and medications to treat CV risk factors. OUTCOMES: Incremental cost-effectiveness ratios (2020 US dollars per quality-adjusted life-year [QALY] gained). Costs and QALYs were discounted 3.0% per year. MODEL, PERSPECTIVE, & TIME FRAME: Cost-effectiveness analysis, commercial insurers and Medicare perspective, lifetime horizon. RESULTS: The incremental cost-effectiveness ratio of empagliflozin with SOC versus SOC alone was $25,974 per QALY. Empagliflozin added 0.67 QALYs and $17,322 per patient over a lifetime horizon. Results were driven by fewer clinical events (including CV death, heart failure hospitalization, albuminuria progression, and a composite kidney outcome) experienced by patients receiving empagliflozin with SOC versus SOC alone. Results were sensitive to rates of CV death, nonfatal myocardial infarction, and heart failure hospitalization, as well as to drug costs and time horizon. Probabilistic sensitivity analyses indicated 91% of simulations at <$50,000 per QALY. LIMITATIONS: The EMPA-REG OUTCOME study was not powered to assess treatment benefits in a subgroup and excluded patients with estimated glomerular filtration rate<30mL/min/1.73m2. CONCLUSIONS: Based on the EMPA-REG OUTCOME study, this cost-effectiveness analysis suggests that, for commercial insurers and Medicare, adding empagliflozin to SOC may be a cost-effective treatment option for patients with DKD.
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Doenças Cardiovasculares , Diabetes Mellitus Tipo 2 , Nefropatias Diabéticas , Insuficiência Cardíaca , Infarto do Miocárdio , Idoso , Compostos Benzidrílicos , Doenças Cardiovasculares/tratamento farmacológico , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/prevenção & controle , Análise Custo-Benefício , Diabetes Mellitus Tipo 2/complicações , Diabetes Mellitus Tipo 2/tratamento farmacológico , Diabetes Mellitus Tipo 2/epidemiologia , Nefropatias Diabéticas/tratamento farmacológico , Glucose/uso terapêutico , Glucosídeos , Insuficiência Cardíaca/tratamento farmacológico , Humanos , Hipoglicemiantes/uso terapêutico , Medicare , Estados Unidos/epidemiologiaRESUMO
AIM: To estimate the cost-effectiveness of sequential use of the sodium-glucose co-transporter-2 inhibitor empagliflozin and glucagon-like peptide-1 receptor agonist liraglutide after metformin in patients with type 2 diabetes (T2D) from the US payer perspective. MATERIALS AND METHODS: An economic simulation model with a lifetime horizon was developed to estimate T2D-related complications (including cardiovascular [CV] death, myocardial infarction, stroke, and renal outcomes) using EMPA-REG OUTCOME data or UK Prospective Diabetes Study risk equations, in patients with or without a history of cardiovascular disease (CVD), respectively. Evidence synthesis methods were used to provide effectiveness inputs for empagliflozin and liraglutide. Population characteristics, adverse event rates, treatment escalation, costs ($2019), and utilities (both discounted 3%/year) were taken from US sources. RESULTS: Compared with second-line liraglutide in the overall T2D population, second-line empagliflozin was dominant as it was associated with lower total lifetime cost ($11 244/patient less) and resulted in a quality-adjusted life-year (QALY) gain (0.32/patient). Second-line empagliflozin was associated with reductions in CV death (by 5%) and lower cumulative complication rates in patients with CVD (by 2%), relative to second-line liraglutide. These findings were consistent among patients with co-morbid CVD, with gains in incremental QALYs (0.43/patient) and lower lifetime cost (by $10 175/patient) relative to second-line liraglutide. Scenario analyses consistently showed dominance for second-line empagliflozin. CONCLUSION: For patients with T2D, use of second-line empagliflozin combined with metformin was a dominant strategy for US payers, associated with extended survival, improved QALYs, and lower costs compared with second-line liraglutide.
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Diabetes Mellitus Tipo 2 , Liraglutida , Compostos Benzidrílicos/efeitos adversos , Análise Custo-Benefício , Diabetes Mellitus Tipo 2/complicações , Diabetes Mellitus Tipo 2/tratamento farmacológico , Diabetes Mellitus Tipo 2/epidemiologia , Glucosídeos , Humanos , Hipoglicemiantes/efeitos adversos , Liraglutida/efeitos adversos , Estudos Prospectivos , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Care homes are complex settings to undertake intervention research. Barriers to research implementation processes can threaten studies' validity, reducing the value to residents, staff, researchers and funders. We aimed to (i) identify and categorise contextual factors that may mediate outcomes of complex intervention studies in care homes and (ii) provide recommendations to minimise the risk of expensive research implementation failures. METHODS: We conducted a systematic review using a framework synthesis approach viewed through a complex adaptive systems lens. We searched: MEDLINE, Embase, CINAHL, ASSIA databases and grey literature. We sought process evaluations of care home complex interventions published in English. Narrative data were indexed under 28 context domains. We performed an inductive thematic analysis across the context domains. RESULTS: We included 33 process evaluations conducted in high-income countries, published between 2005 and 2019. Framework synthesis identified barriers to implementation that were more common at the task and organisational level. Inductive thematic analysis identified (i) avoiding procedural drift and (ii) participatory action and learning as key priorities for research teams. Research team recommendations include advice for protocol design and care home engagement. Care home team recommendations focus on internal resources and team dynamics. Collaborative recommendations apply to care homes' individual context and the importance of maintaining positive working relationships. DISCUSSION: Researchers planning and undertaking research with care homes need a sensitive appreciation of the complex care home context. Study implementation is most effective where an intervention is co-produced, with agreed purpose and adequate resources to incorporate within existing routines and care practices.
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BACKGROUND: Care homes provide long term care for older people. Countries with standardised approaches to residents' assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and review residents' everyday care. The review aimed to develop a theory-driven understanding of how care home staff can effectively implement and use MDS to plan and deliver care for residents. METHODS: The realist review was organised according to RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines. There were three overlapping stages: 1) defining the scope of the review and theory development on the use of minimum data set 2) testing and refining candidate programme theories through iterative literature searches and stakeholders' consultations as well as discussion among the research team; and 3) data synthesis from stages 1 and 2. The following databases were used MEDLINE via OVID, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ASSIA [Applied Social Sciences Citation Index and Abstracts]) and sources of grey literature. RESULTS: Fifty-one papers informed the development of three key interlinked theoretical propositions: motivation (mandates and incentives for Minimum Data Set completion); frontline staff monitoring (when Minimum Data Set completion is built into the working practices of the care home); and embedded recording systems (Minimum Data Set recording system is integral to collecting residents' data). By valuing the contributions of staff and building on existing ways of working, the uptake and use of an MDS could enable all staff to learn with and from each other about what is important for residents' care CONCLUSIONS: Minimum Data Sets provides commissioners service providers and researchers with standardised information useful for commissioning planning and analysis. For it to be equally useful for care home staff it requires key activities that address the staff experiences of care, their work with others and the use of digital technology. REGISTRATION: PROSPERO registration number CRD42020171323.
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Assistência de Longa Duração , Motivação , Idoso , HumanosRESUMO
PURPOSE: Much of the heredity of melanoma remains unexplained. We sought predisposing germline copy-number variants using a rare disease approach. METHODS: Whole-genome copy-number findings in patients with melanoma predisposition syndrome congenital melanocytic nevus were extrapolated to a sporadic melanoma cohort. Functional effects of duplications in PPP2R3B were investigated using immunohistochemistry, transcriptomics, and stable inducible cellular models, themselves characterized using RNAseq, quantitative real-time polymerase chain reaction (qRT-PCR), reverse phase protein arrays, immunoblotting, RNA interference, immunocytochemistry, proliferation, and migration assays. RESULTS: We identify here a previously unreported genetic susceptibility to melanoma and melanocytic nevi, familial duplications of gene PPP2R3B. This encodes PR70, a regulatory unit of critical phosphatase PP2A. Duplications increase expression of PR70 in human nevus, and increased expression in melanoma tissue correlates with survival via a nonimmunological mechanism. PPP2R3B overexpression induces pigment cell switching toward proliferation and away from migration. Importantly, this is independent of the known microphthalmia-associated transcription factor (MITF)-controlled switch, instead driven by C21orf91. Finally, C21orf91 is demonstrated to be downstream of MITF as well as PR70. CONCLUSION: This work confirms the power of a rare disease approach, identifying a previously unreported copy-number change predisposing to melanocytic neoplasia, and discovers C21orf91 as a potentially targetable hub in the control of phenotype switching.
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Melanoma , Nevo , Neoplasias Cutâneas , Humanos , Imuno-Histoquímica , Melanoma/genética , Fenótipo , Neoplasias Cutâneas/genéticaRESUMO
AIM: To estimate the cost-effectiveness of sequential addition of empagliflozin versus sitagliptin after metformin in patients with type 2 diabetes (T2D) with or without cardiovascular disease (CVD) from the perspective of the US healthcare payer. METHODS: An individual simulation model predicted lifetime diabetes-related complications, using UKPDS-OM2 equations in patients without CVD, and EMPA-REG OUTCOME equations in patients with CVD. Additional US-based sources informed inputs for population characteristics, adverse events, non-CV death, treatment escalation, quality of life and costs. Costs and quality-adjusted life-years (QALYs) were discounted 3.0% annually. RESULTS: The incremental cost-effectiveness ratio (ICER) for second-line empagliflozin versus sitagliptin in the overall T2D population was $6967/QALY. Empagliflozin led to longer CVD-free survival (0.07 years) and an 11% reduction in CV death in patients with CVD compared with sitagliptin. Empagliflozin resulted in greater benefits with greater costs in patients with versus without baseline CVD, yielding ICERs of $3589/QALY versus $12 577/QALY, respectively. Results were consistent across a range of deterministic and probabilistic sensitivity analyses and scenarios. CONCLUSION: Compared with sitagliptin, empagliflozin was cost-effective (at $50 000/QALY US threshold) as a second-line treatment to metformin for T2D patients with or without CVD in the United States. Our findings lend additional support for more widespread adoption of guidelines by healthcare decision-makers for T2D treatment.
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Diabetes Mellitus Tipo 2 , Compostos Benzidrílicos , Análise Custo-Benefício , Diabetes Mellitus Tipo 2/complicações , Diabetes Mellitus Tipo 2/tratamento farmacológico , Diabetes Mellitus Tipo 2/epidemiologia , Glucosídeos , Humanos , Hipoglicemiantes/uso terapêutico , Qualidade de Vida , Anos de Vida Ajustados por Qualidade de Vida , Fosfato de Sitagliptina/uso terapêutico , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Increased self-management is a suggested solution to the burden on health-care services of long-term conditions (LTCs). This requires effective sharing of knowledge between health-care professionals and patients, and is an underexplored area. OBJECTIVE: To understand how patients and health-care professionals (HCPs) share and utilize knowledge in the social context of health-care interactions within long-term condition management. METHODS: Thematic analysis of 93 hours of observations of health-care interactions and 33 semi-structured interviews involving patients, carers and HCPs. RESULTS: 3 themes were identified: normative social roles, differing professional roles and the value of knowledge. Knowledge sharing was a complex process heavily influenced by social and cultural norms within the health-care context. Not all knowledge was easily shared within routine health-care interactions. DISCUSSION: The social context in which health-care is practised influences what knowledge is shared and how this is achieved. It favours sharing of clinical knowledge from HCPs to patients and disadvantages patients in their ability to share their unique knowledge based on lived experience of illness. The opportunities for patients to be supported in their knowledge, skills and confidence within routine health-care interactions are limited. CONCLUSION: Both patients and HCPs need support to recognize the characteristics of the social context of health care and their understandings of their roles within this in order for them to move beyond accepted behaviours to develop more effective partnership working. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in initial design of the study, particularly ethics of ethnographic observation.
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Autogestão , Cuidadores , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde , Humanos , Papel ProfissionalRESUMO
BACKGROUND: Patient and public involvement (PPI) is increasingly important in healthcare research. Although this is accepted at the level of individual research studies, it has been less well used in scoping fundamental research priorities. It has been suggested that patients with long-term conditions (LTCs) are well placed to influence research priorities in this area due to their accumulated experience of illness over time. AIMS: To obtain PPI in research-priority setting for a group with a special interest in LTC research. DISCUSSION: PPI representatives provided views on issues they thought required further research. The facilitators were able to move from the specifics of these ideas to identify cross-cutting research priorities. CONCLUSION: It was possible to determine broad research themes despite PPI representatives initially articulating identified issues in very specific terms. Facilitating a better understanding of the research process for PPI representatives would allow their contribution to be more effective. Implications for practice PPI should be considered at the beginning of the process when broad research priorities are considered and before the study design. This is particularly so for broad, non-specialty-focused research themes such as LTCs. More work is required to ensure the views of harder-to-reach groups are included in this type of PPI.
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Doença Crônica , Participação da Comunidade , Pesquisa sobre Serviços de Saúde , Participação do Paciente , Doença Crônica/terapia , Pesquisa sobre Serviços de Saúde/organização & administração , HumanosRESUMO
BACKGROUND: Families' communication needs during the early cancer treatment period (ECTP) may not be optimally met by current practices. We sought to identify potential communication gaps and to ameliorate these by developing a novel in-depth conversation between families and their pediatric oncologists, the "Day 100 Talk" (D100), during the ECTP. PROCEDURE: We conducted semistructured interviews with parents and patients undergoing childhood cancer treatment for < 7 months. Interviews sought to elicit perceived communication gaps regarding cancer care and inform D100 development. Following qualitative analysis of interview responses, we developed a three-part D100 conversation tool consisting of a preparatory family worksheet, a conversation guide, and a family summary sheet. We presented the tool during interviews and a focus group with pediatric oncology providers and revised it to incorporate provider input. RESULTS: Twenty-two stakeholders (six parents, five adolescents, and 11 providers) participated in interviews or a focus group. Parents and patients perceived insufficient anticipatory guidance as the most important communication gap. They also reported sometimes withholding worries and cancer-related beliefs. Meanwhile, oncology providers worried about "opening Pandora's Box" and limited clinical time. Additionally, providers reported employing indirect methods such as surmising to determine families' needs and relying on psychosocial clinicians to engage families around potentially "taboo" issues of emotional coping and spirituality. CONCLUSION: Creating a communication occasion (D100), ensuring complementary disciplinary expertise through joint participation by oncologists and psychosocial clinicians, and providing a conversation tool to prompt disclosure by families and facilitate anticipatory guidance may ameliorate existing communication gaps during the ECTP.
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Comunicação , Tomada de Decisões , Neoplasias/terapia , Oncologistas , Pais , Adaptação Psicológica , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Masculino , Neoplasias/diagnóstico , Relações Profissional-Família , Pesquisa Qualitativa , Adulto JovemRESUMO
AIMS AND OBJECTIVES: To explore patients' perceptions of continuity of care within a hospital-based specialist service. BACKGROUND: Patient journeys through health care are becoming increasingly complex. For patients with chronic conditions, the longevity of their illness and common multiple co-morbidities make this complexity more pronounced. Continuity of care is most challenging to provide for these patients. A multifaceted model of continuity is widely accepted, but despite this, much literature focuses exclusively on relational aspects. In addition, the majority of the literature has focused on primary and family care settings whilst continuity within specialist and hospital care has not been widely researched. DESIGN: A qualitative descriptive design was used. METHODS: Thirteen semi-structured interviews with patients accessing services as at a Renal and Transplant Unit at a UK hospital were conducted in 2014. Data were analysed thematically to identify commonality as well as diversity amongst participants. RESULTS: Five themes of time, being known, knowledge, knowing the system and responsibility were identified within patient experiences of continuity. The multidisciplinary team was more important in relational continuity than literature has previously suggested. Patients' expectations in relation to continuity were notably different in their interactions with hospital-based services in comparison with community and family-based care. CONCLUSIONS: Patients accessing specialist care services may perceive continuity differently to those receiving care in the community. Generic guidance concerned with patient experience outcomes may be difficult to implement in practice. RELEVANCE TO CLINICAL PRACTICE: Nurses and the wider healthcare team play a fundamental role within the provision of continuity, even in predominantly medically led specialist services. The differences between primary and secondary care in terms of patient expectation and experience should be recognised to ensure effective models of care are implemented which both meet patient expectations and improve their experience of care.
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Continuidade da Assistência ao Paciente , Insuficiência Renal Crônica/enfermagem , Insuficiência Renal Crônica/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Atenção Primária à Saúde , Pesquisa Qualitativa , Atenção Secundária à SaúdeRESUMO
PURPOSE: The American Academy of Pediatrics recommends that healthcare providers communicate information to patients in a truthful and developmentally appropriate manner. However, there is limited guidance about how to translate these recommendations into clinical practice. The aim of this study was to explore how young cancer patients experienced communication around their illness, especially communication about possible outcomes from disease or treatment. METHODS: Participants included young people ages 8 to under 18 years with cancer (N = 16). Semi-structured interviews focused on their expectations about the future, the process of information exchange, and their preferences for communication within the pediatric oncology setting. RESULTS: Overall, participants wanted medical information to be provided to them by their healthcare providers and wanted to be direct participants in medical conversations. However, many participants displayed some ambivalence or conveyed conflicting wishes for prognostic information. For example, some participants reported that they were satisfied with what they knew, but later raised lingering questions. While not the focus of the study, almost every participant discussed social concerns as a key concern for their present and future life. CONCLUSIONS: While most pediatric cancer patients want to be involved in conversations about their cancer care, including conversations about prognosis, this is an individual and sometimes fluctuating decision, and healthcare providers should be encouraged to discuss preferences for involvement with patients and families. This study highlights the importance of understanding the developmental factors that make pediatric patients unique, especially with regard to their patterns of communication.
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Comunicação , Neoplasias/psicologia , Neoplasias/terapia , Preferência do Paciente , Relações Profissional-Paciente , Adolescente , Criança , Feminino , Humanos , Masculino , Pediatria/métodos , PrognósticoRESUMO
Children and adolescents who require limb amputation as part of cancer treatment face many physical and emotional challenges. Preparatory interventions may serve to facilitate positive coping and improve long-term adjustment during pediatric cancer treatment, including decreasing anxiety and postoperative distress. This review aimed to examine and identify the type and degree of psychosocial preparation provided to the child with cancer and family prior to amputation. Electronic databases including Embase, PubMed, and PsycINFO were searched for relevant research articles. Five studies were identified that satisfied inclusion criteria and revealed common themes for preparatory interventions, but results were limited by a lack of empirical approaches and revealed little consensus on pre-operative support prior to amputation. These findings demonstrate that there is a lack of studies to date that have adequately addressed psychosocial preparation prior to amputation for pediatric oncology patients. Future research on preparatory interventions is needed using prospective and quantitative research to establish evidence-based recommendations for interventions to support this vulnerable population.
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Adaptação Psicológica , Amputação Cirúrgica/psicologia , Neoplasias/cirurgia , Adolescente , Criança , HumanosRESUMO
Communication is central to pediatric oncology care. Pediatric oncologists disclose life-threatening diagnoses, explain complicated treatment options, and endeavor to give honest prognoses, to maintain hope, to describe treatment complications, and to support families in difficult circumstances ranging from loss of function and fertility to treatment-related or disease-related death. However, parents, patients, and providers report substantial communication deficits. Poor communication outcomes may stem, in part, from insufficient communication skills training, overreliance on role modeling, and failure to utilize best practices. This review summarizes evidence for existing methods to enhance communication skills and calls for revitalizing communication skills training within pediatric oncology.
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Educação Médica/métodos , Oncologia/educação , Pediatria/educação , Relações Médico-Paciente , Comunicação , HumanosRESUMO
PURPOSE: Cancer-related fatigue (CRF) is one of the most commonly reported and distressing symptoms experienced by adolescent and young adult (AYA) cancer survivors. While national guidelines have recommended screening for CRF during routine follow-up appointments, the validity of using a one-item screening measure for fatigue has not been examined with AYA brain tumor survivors. The purpose of this study is to assess how well a single-item fatigue screen could identify clinically significant fatigue in childhood brain tumor survivors. METHODS: A single-item measure, the Fatigue Thermometer (FT), was compared with a more in-depth measure, the Multidimensional Fatigue Scale (MFS), in a cohort of AYA pediatric brain tumor survivors. One hundred and forty-two survivors (aged 12-32 years) completed the two instruments. RESULTS: Forty-two survivors were identified on the MFS as having clinically significant fatigue, but the FT was not found to be an accurate tool for identifying these cases. Although receiver operating characteristic curve analysis of FT ratings against the MFS criterion indicated good concordance between measures, no cutoff score on the FT was identified that resulted in acceptable sensitivity and specificity. CONCLUSIONS: Results from this study suggest that a single-item screening measure for fatigue is not able to reliably identify clinically significant fatigue in AYA brain tumor survivors.
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Neoplasias Encefálicas/complicações , Fadiga/diagnóstico , Programas de Rastreamento/métodos , Adolescente , Adulto , Neoplasias Encefálicas/mortalidade , Neoplasias Encefálicas/patologia , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Masculino , Qualidade de Vida , Sobreviventes , Adulto JovemRESUMO
Survivors of pediatric brain tumors experience several medical and psychosocial late effects including deficits in social competence. This mixed methods study investigated the experience of 19 adolescent and young adult survivors of pediatric brain tumors and 17 parents who participated in a social support program. Qualitative results demonstrated a significant social isolation that was compounded by medical late effects. Survivors perceived social support and acceptance from interactions with peers who have similar medical backgrounds as a key aspect of the group experience. Parents reported increased social confidence among survivors, although they did not report that social gains generalized beyond the group setting. Interventions to promote the transfer of specific social skills are needed.
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Neoplasias Encefálicas/psicologia , Relações Interpessoais , Grupo Associado , Apoio Social , Sobreviventes/psicologia , Adolescente , Adulto , Neoplasias Encefálicas/terapia , Feminino , Humanos , Masculino , Pais/psicologia , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Habilidades Sociais , Sobreviventes/estatística & dados numéricos , Adulto JovemRESUMO
Many healthy workplace interventions have been developed for healthcare settings to address the consistently low scores of healthcare professionals on assessments of mental and physical well-being. Complex healthcare settings present challenges for the scale-up and spread of successful interventions from one setting to another. Despite general agreement regarding the importance of the local setting in affecting intervention success across different settings, there is no consensus on what it is about a local setting that needs to be taken into account to design healthy workplace interventions appropriate for different local settings. Complexity theory principles were used to understand a workplace as a complex adaptive system and to create a framework of eight domains (system characteristics) that affect the emergence of system-level behaviour. This Workplace of Well-being (WoW) framework is responsive and adaptive to local settings and allows a shared understanding of the enablers and barriers to behaviour change by capturing local information for each of the eight domains. We use the results of applying the WoW framework to one workplace, a UK National Health Service ward, to describe the utility of this approach in informing design of setting-appropriate healthy workplace interventions that create workplaces conducive to healthy behaviour change.
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Pessoal de Saúde/psicologia , Modelos Psicológicos , Saúde Ocupacional , Local de Trabalho/psicologia , Humanos , Medicina Estatal , Inquéritos e Questionários , Reino Unido , Recursos Humanos , Local de Trabalho/classificação , Local de Trabalho/organização & administraçãoRESUMO
The workplace is an important setting for promoting health and well-being. We sought to understand how successful workplace health and well-being programs were developed and implemented to inform the development of a program for a National Health Service (NHS) hospital. Case studies of successful healthy workplace programs with 34 semi-structured employee interviews informed 12 interviews with NHS staff. Interviews were thematically analyzed using Nvivo. Themes were fed back to participants for further clarification and validation. Healthy workplace programs were characterized by senior management endorsement; collective sense of ownership; presence of visible "quick wins"; and a sense that participation was easy and fun, not mandated. Programs evolved organically, allowing trust to be built and activities to be developed with employees. Interviews with NHS staff suggested a lack of belief in the possibility of change in their workplace due to time and workload pressures, and a sense of an "us and them" relationship with management, as well as environmental barriers. A consistent pattern of how the conditions for a healthy workplace can be created, which map onto the results from the NHS ward staff, suggest that without creating an enabling environment for health-promoting behaviors, workplace programs will have poor uptake and retention.
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Promoção da Saúde/organização & administração , Saúde Ocupacional , Medicina Estatal/organização & administração , Local de Trabalho , Dieta , Exercício Físico , Humanos , Saúde Mental , Gestão da Segurança , Transtornos Relacionados ao Uso de Substâncias/prevenção & controleRESUMO
OBJECTIVE: With the growing number of childhood cancer survivors in the US, it is important to assess the well-being of these individuals, particularly during the transitional phase of adolescence. Data about adolescent survivors' overall health and quality of life will help identify survivor subgroups most in need of targeted attention to successfully transition to adulthood. PARTICIPANTS AND METHODS: This ancillary study to the Childhood Cancer Survivor Study focused on children 15-19 years of age who had been diagnosed with cancer before the age of 4 years. A cohort of siblings of pediatric cancer survivors of the same ages served as a comparison sample. Adolescent health was assessed using the Child Health and Illness Profile-Adolescent Edition (CHIP-AE) survey. RESULTS: The teen survey was sent to 444 survivor teens and 189 siblings. Of these, 307(69%) survivors and 97 (51%) siblings completed and returned the survey. The overall health profiles of siblings and survivors were similar. Among survivors, females scored significantly below males on satisfaction, discomfort, and disorders domains. Survivors diagnosed with central nervous system tumors scored less favorably than leukemia survivors in the global domains of satisfaction and disorders. CONCLUSION: In general, adolescent survivors fare favorably compared to healthy siblings. However, identification of the subset of pediatric cancer survivors who are more vulnerable to medical and psychosocial disorders in adolescence provides the opportunity for design and implementation of intervention strategies that may improve quality of life.