104 research outputs found

    Fragmentation and control: the experiences of women at high risk for breast and ovarian cancer

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    BRCA1 and BRCA2 are tumor suppressor genes that when mutated, are associated with increased susceptibility to several types of cancer including breast and ovarian cancer. The current standard of care for women with a BRCA mutation involves increased screening frequency and decisions around risk reduction strategies that may drastically alter their fertility and sense of womanhood. The uncertainty related to a possible cancer diagnosis may seem endless and unrelenting as these women navigate their future. Previous studies have identified the short-term distress and needs of women undergoing genetic testing and have adjusted appropriately. However, the potential for long-term distress associated with a BRCA mutation is often minimized in the literature and overlooked resulting in women managing their physical and emotional health on their own. The purpose of this study was to explore the emotional distress and long-term support needs for women without a previous cancer diagnosis who are at high risk for breast and/or ovarian cancer, to make recommendations for practice changes to accommodate these needs. The principal investigator conducted individual in person interviews in a private space at a public location with each of the 5 participants. Participants were recruited through the Pittsburgh Chapter of the National Ovarian Cancer Coalition. The interviews were audio recorded and transcribed using a licensed transcription service. The data were then analyzed by coding and identifying themes and subthemes. The data clustered into five major themes: (1) fragmentation of genetic counselling and post-counsel, (2) coping by exercising control, (3) individualized support, (4) support needs through the life course, and (5) the internet and accessibility of information and support. Although women have different experiences in genetic counseling and long-term support, this study suggests the needs of this population are not currently being met. The themes and subthemes identified in the qualitative data allow healthcare professionals to reevaluate their approach in supporting and informing these women as well as act as a starting point for future research regarding long-term needs, patient follow up, and the genetic counseling process

    Finding the 'right' GP : a qualitative study of the experiences of people with long-COVID

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    Background: An unknown proportion of people who had an apparently mild COVID-19 infection continue to suffer with persistent symptoms, including chest pain, shortness of breath, muscle and joint pains, headaches, cognitive impairment (‘brain fog’), and fatigue. Post-acute COVID-19 (‘long-COVID’) seems to be a multisystem disease, sometimes occurring after a mild acute illness; people struggling with these persistent symptoms refer to themselves as ‘long haulers’. Aim: To explore experiences of people with persisting symptoms following COVID-19 infection, and their views on primary care support received. Design & setting: Qualitative methodology, with semi-structured interviews to explore perspectives of people with persisting symptoms following suspected or confirmed COVID-19 infection. Participants were recruited via social media between July–August 2020. Method: Interviews were conducted by telephone or video call, digitally recorded, and transcribed with consent. Thematic analysis was conducted applying constant comparison techniques. People with experience of persisting symptoms contributed to study design and data analysis. Results: This article reports analysis of 24 interviews. The main themes include: the ‘hard and heavy work’ of enduring and managing symptoms and accessing care; living with uncertainty, helplessness and fear, particularly over whether recovery is possible; the importance of finding the 'right' GP (understanding, empathy, and support needed); and recovery and rehabilitation: what would help? Conclusion: This study will raise awareness among primary care professionals, and commissioners, of long-COVID and the range of symptoms people are experiencing. Patients require their GP to believe their symptoms and to demonstrate empathy and understanding. Ongoing support by primary care professionals during recovery and rehabilitation is crucial

    Duplex assessment of venous reflux and chronic venous insufficiency: The significance of deep venous reflux

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    AbstractPurpose: This study was undertaken to examine the role of superficial and deep venous reflux, as defined by duplex-derived valve closure times (VCTs), in the pathogenesis of chronic venous insufficiency.Methods: Between January 1992 and November 1995, 320 patients and 500 legs were evaluated with clinical examinations and duplex scans for potential venous reflux. VCTs were obtained with the cuff deflation technique with the patient in the upright position. Imaging was performed at the saphenofemoral junction, the middle segment of the greater saphenous vein, the lesser saphenous vein, the superficial femoral vein, the profunda femoris vein, and the popliteal vein. Not all patients had all segments examined because tests early in the series did not examine the profunda femoris or lesser saphenous vein and because some patients had previous ligation and stripping or venous thrombosis. VCTs were examined for individual segment reflux, grouped into superficial and deep systems, and then correlated with the clinical stage as defined by the SVS/ISCVS original reporting standards in venous disease. Segment reflux was considered present if the VCT was greater than 0.5 seconds, and system reflux was considered present if the sum of the segments was greater than 1.5 seconds. Between-group differences were analyzed with analysis of variance and post hoc tests where appropriate.Results: Sixty-nine limbs studied were in class 0, 149 limbs were in class 1, 168 limbs were in class 2, and 114 limbs were in class 3. VCTs in the superficial veins were significantly lower in class 0 than in the other clinical classes. There was no difference in superficial reflux in the symptomatic limbs (classes 1 to 3). Reflux VCTs in the superficial femoral and popliteal veins increased as the clinical symptoms progressed, with a significant increase in class 3 ulcerated limbs when compared with nonulcerated limbs. The incidence of deep venous reflux was 60% in class 3 limbs, compared with 29% in class 2 limbs, whereas the incidence of superficial venous reflux did not differ among the symptomatic limbs. Isolated superficial femoral and popliteal vein reflux was uncommon, even in class 3 limbs, but combined superficial femoral and popliteal vein reflux was found in 53% of class 3 limbs, compared with 18.5% of class 2 limbs.Conclusions: Reflux in the deep venous system plays a significant role in the progression of chronic venous insufficiency. Deep system reflux increases as clinical changes become more severe, with significant axial reflux contributing to ulcer formation. (J Vasc Surg 1996;24:755-62.

    'Reluctant pioneer':A qualitative study of doctors' experiences as patients with long COVID

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    Background: The coronavirus disease (COVID‐19) pandemic has had far‐reaching effects upon lives, healthcare systems and society. Some who had an apparently 'mild' COVID‐19 infection continue to suffer from persistent symptoms, including chest pain, breathlessness, fatigue, cognitive impairment, paraesthesia, muscle and joint pains. This has been labelled 'long COVID'. This paper reports the experiences of doctors with long COVID. Methods: A qualitative study; interviews with doctors experiencing persistent symptoms were conducted by telephone or video call. Interviews were transcribed and analysis conducted using an inductive and thematic approach. Results: Thirteen doctors participated. The following themes are reported: making sense of symptoms, feeling let down, using medical knowledge and connections, wanting to help and be helped, combining patient and professional identity. Experiencing long COVID can be transformative: many expressed hope that good would come of their experiences. Distress related to feelings of being ‘let down’ and the hard work of trying to access care. Participants highlighted that they felt better able to care for, and empathize with, patients with chronic conditions, particularly where symptoms are unexplained. Conclusions: The study adds to the literature on the experiences of doctors as patients, in particular where evidence is emerging and the patient has to take the lead in finding solutions to their problems and accessing their own care. Patient and Public contribution: The study was developed with experts by experience (including co‐authors HA and TAB) who contributed to the protocol and ethics application, and commented on analysis and implications. All participants were given the opportunity to comment on findings

    Perceptions and barriers of adverse drug reaction reporting within inpatient state psychiatric facilities

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    Introduction: Adverse drug reactions (ADRs) are a leading cause of morbidity and mortality for hospitalized patients. Health care organizations track ADRs to reduce patient mortality, reduce hospital readmissions, decrease costs, and improve patient care. Differing definitions of ADRs cause confusion among providers, leading to hesitation with ADR reporting. The objective of this study was to understand health care professionals' perspectives of ADR reporting within inpatient state psychiatric facilities. Methods: A survey was sent to 143 health care professionals throughout 25 inpatient state psychiatric facilities within 1 state. The survey assessed the definition of an ADR, confidence in reporting, barriers to reporting, the role of reporting, who should report and review ADRs, and strategies for process improvement. Results: The survey had a 75.5% response rate with 108 respondents. Most respondents could identify the definition of an ADR, were moderately confident in reporting ADRs, and understood the importance of ADR reporting. Barriers to ADR reporting included the reaction not being serious, a lack of information about the ADR, or not enough clarity on how to report an ADR. Fear of retaliation was an additional barrier to ADR reporting. Training and direction on ADR reporting, education on real versus perceived consequences, a designated point person to aid in reporting, and better access to reporting technology were suggested improvements for ADR reporting. Discussion: From this survey, it is evident that respondents believe improved education and training, improved communication regarding reporting consequences, and consensus on the definition of an ADR would encourage reporting

    Analyzing collaborative learning processes automatically

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    In this article we describe the emerging area of text classification research focused on the problem of collaborative learning process analysis both from a broad perspective and more specifically in terms of a publicly available tool set called TagHelper tools. Analyzing the variety of pedagogically valuable facets of learners’ interactions is a time consuming and effortful process. Improving automated analyses of such highly valued processes of collaborative learning by adapting and applying recent text classification technologies would make it a less arduous task to obtain insights from corpus data. This endeavor also holds the potential for enabling substantially improved on-line instruction both by providing teachers and facilitators with reports about the groups they are moderating and by triggering context sensitive collaborative learning support on an as-needed basis. In this article, we report on an interdisciplinary research project, which has been investigating the effectiveness of applying text classification technology to a large CSCL corpus that has been analyzed by human coders using a theory-based multidimensional coding scheme. We report promising results and include an in-depth discussion of important issues such as reliability, validity, and efficiency that should be considered when deciding on the appropriateness of adopting a new technology such as TagHelper tools. One major technical contribution of this work is a demonstration that an important piece of the work towards making text classification technology effective for this purpose is designing and building linguistic pattern detectors, otherwise known as features, that can be extracted reliably from texts and that have high predictive power for the categories of discourse actions that the CSCL community is interested in
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