BackgroundFew studies have been undertaken to understand the employment impact in patients with colorectal cancer and none in middle-aged individuals with cancer. This study described transitions in, and key factors influencing, work participation during the 12 months following a diagnosis of colorectal cancer.MethodsWe enrolled 239 adults during 2010 and 2011who were employed at the time of their colorectal cancer diagnosis and were prospectively followed over 12 months. They were compared to an age- and gender-matched general population group of 717 adults from the Household, Income and Labour Dynamics in Australia (HILDA) Survey. Data were collected using telephone and postal surveys. Primary outcomes included work participation at 12 months, changes in hours worked and time to work re-entry. Multivariable logistic and Cox proportional hazards models were undertaken.ResultsA significantly higher proportion of participants with colorectal cancer (27%) had stopped working at 12 months than participants from the comparison group (8%) (p < 0.001). Participants with cancer who returned to work took a median of 91 days off work (25–75 percentiles: 14–183 days). For participants with cancer, predictors of not working at 12 months included: being older, lower BMI and lower physical well-being. Factors related to delayed work re-entry included not being university-educated, working for an employer with more than 20 employees in a non-professional or managerial role, longer hospital stay, poorer perceived financial status and having or had chemotherapy.ConclusionsIn middle-adulthood, those working and diagnosed with colorectal cancer can expect to take around three months off work. Individuals treated with chemotherapy, without a university degree and from large employers could be targeted for specific assistance for a more timely work entry.Trial registrationACTRN12611000530921Electronic supplementary materialThe online version of this article (doi:10.1186/1471-2458-14-963) contains supplementary material, which is available to authorized users.
Plain English summaryPatient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients' needs. Though PPI is increasingly evident in clinical and health services research, there are few examples in the research literature of effective PPI in translational and laboratory-based research. In this paper, we describe the development and evaluation of PPI in a multi-centre European project (EuroTEAM -Towards Early biomarkers in Arthritis Management) that included both translational and laboratory-based and psychosocial research. We found that although most PPI in EuroTEAM was centred around the psychosocial research, there were examples of PPI in the laboratory studies. As the project evolved, researchers became better at accommodating PPI and identifying PPI opportunities. It was generally agreed that PPI had a positive impact on the project overall, particularly on public engagement with the research. We concluded that the inclusion of both psychosocial and laboratory-based research in the same project facilitated PPI across all aspects of the research. In future projects, we would try to specify individual PPI activities in more detail at the project-planning stage, and better accommodate patient partners who are not native speakers of English. AbstractBackground Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. The value of PPI has been recognised in rheumatology research, though there are limited examples of PPI in basic and translational science. The EU FP7 funded 'EuroTEAM' (Towards Early biomarkers in Arthritis Management) project was established to develop biomarker-based approaches to predict the future development of rheumatoid arthritis and incorporated psychosocial research to investigate the perceptions of 'at risk' individuals about predictive testing, and to develop informational resources about rheumatoid arthritis (RA) risk. Patient involvement was central to EuroTEAM from the inception of the project. The objective of this paper is to describe the development of (Continued on next page)
The behavioral and social sciences are central to understanding and addressing oral and craniofacial health, diseases, and conditions. With both basic and applied approaches, behavioral and social sciences are relevant to every discipline in dentistry and all dental, oral, and craniofacial sciences, as well as oral health promotion programs and health care delivery. Key to understanding multilevel, interacting influences on oral health behavior and outcomes, the behavioral and social sciences focus on individuals, families, groups, cultures, systems, societies, regions, and nations. Uniquely positioned to highlight the importance of racial, cultural, and other equity in oral health, the behavioral and social sciences necessitate a focus on both individuals and groups, societal reactions to them related to power, and environmental and other contextual factors. Presented here is a consensus statement that was produced through an iterative feedback process. The statement reflects the current state of knowledge in the behavioral and social oral health sciences and identifies future directions for the field, focusing on 4 key areas: behavioral and social theories and mechanisms related to oral health, use of multiple and novel methodologies in social and behavioral research and practice related to oral health, development and testing of behavioral and social interventions to promote oral health, and dissemination and implementation research for oral health. This statement was endorsed by over 400 individuals and groups from around the world and representing numerous disciplines in oral health and the behavioral and social sciences. Having reached consensus, action is needed to advance and further integrate and translate behavioral and social sciences into oral health research, oral health promotion and health care, and the training of those working to ensure oral health for all.
In this article, we examine participants' talk about qualitative research. We provide empirical support for post structural theorizations of the interview and propose three distinct but related dimensions of qualitative research: emotional, purposive/relational, and epistemic/ontological. In this study, participants often became upset but constructed participation as enjoyable and cathartic. The purpose of participation was to assist the communities to which one belonged. Participation was an active, reflexive practice that reconstructed the self and changed knowledge about one's self. This latter epistemic/ontological dimension of participation appeared to be the most compelling for participants, but it is also the hardest to observe, with implications for how we consider the costs and benefits of participation. We suggest two practical measures for researchers and institutional review boards to consider in light of our findings: routinely asking questions about the research experience in qualitative studies and reformulating patient information statements to particularize them to qualitative research.Keywords: emotions; epistemology; ethics; qualitative research, general; research participation Think back over the qualitative interviews you have conducted and analysed. How often have participants asked about the purpose of a study, questioned your questions, analysed their answers, imagined other participants, or evaluated the potential benefits arising from a project? Such a comment or question is a kind of meta research moment, an instance in which the usual interview procedure-the researcher asking questions and the participant answering-is overturned, drawing attention to the interaction itself. You might remember several meta research moments from your own career, particularly if they involved a potential loss of face for you as interviewer or produced a key insight. You have probably forgotten many others, as these moments are usually treated as peripheral. The synthesis of raw data into powerful ideas and recommendations is difficult. In analysis we strive for focus, for explanatory power, for coherent theorization, and for description layered thickly rather than spread thin so that we can make a convincing case to our readership and enhance the usefulness of our work. In analysis we create succinct publications and presentations by prioritizing and synthesizing data. The meta moments referred to above are usually deprioritized,
While the most obvious manifestations of rheumatoid arthritis (RA) involve inflammation and damage in the synovial joints, the systemic effects of the condition are widespread and life-threatening. Of particular interest is the 'lipid paradox' of RA, where patients with a numerically equivocal starting lipid profile have a significantly raised risk of cardiovascular (CV) events and response to therapy results in a 'normalization' of lipid levels and reduction in events. Changes in lipids can be seen before overt disease manifestations which suggest that they are closely linked to the more widespread inflammation-driven metabolic changes associated with tumour necrosis factor (TNF). Cachexia involves a shift in body mass from muscle to fat, which may or may not directly increase the cardiovascular risk. However, since TNF inhibition is associated with reduction in cardiovascular events, it does suggest that these widespread metabolic changes involving lipids are of importance. Analysis of single lipids or metabolites have been used to identify some of the key changes, but more recently, metabolomic and lipidomic approaches have been applied to identify a broad spectrum of small molecule changes and identify potentially altered metabolic pathways. Further work is needed to understand fully the metabolic changes in lipid profiles and identify novel ways of targeting desired profile changes, but work so far does suggest that a better understanding may allow management of patients to downregulate the systemic effects of their disease that puts them at risk of cardiovascular complications.
The first structural data for [Fe(phen)(2)(NCSe)(2)] (obtained using the extraction method of sample preparation) in its high-spin, low-spin and LIESST induced metastable high-spin states have been recorded using synchrotron radiation single crystal diffraction. The space group for all of the spin states was found to be Pbcn. On cooling from the high-spin state (HS-1) at 292 K through the spin crossover at about 235 K to the low-spin state at 100 K (LS-1) the iron coordination environment changed to a more regular octahedral geometry and the Fe-N bond lengths decreased by 0.216 and 0.196 A (Fe-N(phen)) and 0.147 A (Fe-N(CSe)). When the low-spin state was illuminated with visible light at about 26 K, the structure of this LIESST induced metastable high-spin state (HS-2) was very similar to that of HS-1 with regards to the Fe-phen bond lengths, but there were some differences in the bond lengths in the Fe-NCSe unit between HS-1 and HS-2. When HS-2 was warmed in the dark to 50 K, the resultant low-spin state (LS-2) had an essentially identical structure to LS-1. In all spin states, all of the shortest intermolecular contacts (in terms of van der Waals radii) involved the NCSe ligand, which may be important in describing the cooperativity in the solid state. The quality of the samples was confirmed by magnetic susceptibility and IR measurements.
Background Informed consent is a mainstay of clinical practice, with both moral and legal force. Material disclosure about extreme treatments, however, is unlikely to convey the full impact of the experience of treatment. Informed consent may be flawed under such circumstances.Aims To compare expressed satisfaction with pre-treatment information to satisfaction after experiencing autologous stem cell transplantation (ASCT) for recurrent lymphoma.Methods A qualitative, narrative-based cohort study has been conducted in a Teaching hospital Bone Marrow Transplant unit at Westmead Hospital, Sydney, Australia. The cohort 2 consisted of ten transplant recipients and nine of their nominated lay carers. The Outcome measure was satisfaction expressed in narrative interviews at the time of transplantation and three months later. We used discourse analytic techniques to examine the narratives.Results Both patients and carers expressed high satisfaction with the information given by individual clinicians and by speakers at a formal Information Day held before transplantation. At the first interview, neither patients nor carers commented much on the forthcoming ordeal of chemotherapy and bone marrow ablation, although all patients had undergone previous chemotherapy. At the second interview, the ordeal dominated the narratives, and retrospective dissatisfaction with information was common.Conclusions This study suggests that information about treatment theories and protocols can be satisfactorily communicated, but personal experience of suffering defies communication. This finding has serious implications for the practices involved in obtaining informed consent and for the very notion of informed consent.
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