31 research outputs found

    "Sometimes we can't fix things": A qualitative study of health care professionals' perceptions of end of life care for patients with heart failure

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    Background Although heart failure has a worse prognosis than some cancers, patients often have restricted access to well-developed end of life (EoL) models of care. Studies show that patients with advanced heart failure may have a poor understanding of their condition and its outcome and, therefore, miss opportunities to discuss their wishes for EoL care and preferred place of death. We aimed to explore the perceptions and experiences of health care professionals (HCPs) working with patients with heart failure around EoL care. Design A qualitative in-depth interview study nested in a wider ethnographic study of unplanned admissions in patients with heart failure (HoldFAST). We interviewed 24 HCPs across primary, secondary and community care in three locations in England, UK – the Midlands, South Central and South West. Results The study revealed three issues impacting on EoL care for heart failure patients. Firstly, HCPs discussed approaches to communicating with patients about death and highlighted the challenges involved. HCPs would like to have conversations with patients and families about death and dying but are aware that patient preferences are not easy to predict. Secondly, professionals acknowledged difficulties recognising when patients have reached the end of their life. Lack of communication between patients and professionals can result in situations where inappropriate treatment takes place at the end of patients’ lives. Thirdly, HCPs discussed the struggle to find alternatives to hospital admission for patients at the end of their life. Patients may be hospitalised because of a lack of planning which would enable them to die at home, if they so wished. Conclusions The HCPs regarded opportunities for patients with heart failure to have ongoing discussions about their EoL care with clinicians they know as essential. These key professionals can help co-ordinate care and support in the terminal phase of the condition. Links between heart failure teams and specialist palliative care services appear to benefit patients, and further sharing of expertise between teams is recommended. Further research is needed to develop prognostic models to indicate when a transition to palliation is required and to evaluate specialist palliative care services where heart failure patients are included

    Finishing the euchromatic sequence of the human genome

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    The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

    Effects of Treatment of Sleep Disordered Breathing on Sleep Macro- and Micro-Architecture in Children with Down Syndrome

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    Background: Children with Down syndrome (DS) are at increased risk of obstructive sleep disordered breathing (SDB), which is associated with intermittent hypoxia and sleep disruption affecting daytime functioning. We aimed to examine the effects of treatment of SDB on sleep quality and daytime functioning in children with DS. Methods: Children with DS and SDB (n = 24) completed a baseline and follow-up overnight polysomnographic (PSG) study 22 ± 7 months (mean ± SD) later. Sleep micro-architecture was assessed using EEG spectral analysis, and parents completed a number of questionnaires assessing sleep, behavior, daytime functioning, and quality of life (QOL). Results: A total of nine children (38%) were treated. At baseline, the treated group had more severe SDB compared to the untreated group. SDB severity was significantly improved from 40.3 ± 46.9 events/h to 17.9 ± 26.9 events/h (p < 0.01) at follow up in children who were treated. There were no significant differences in sleep macro-architecture parameters from baseline to follow up in either the treated or untreated group. Sleep micro-architecture was not different between studies in the treated group, however this tended to improve in the untreated group, particularly in REM sleep. Daytime functioning and behavior were not different between the studies in either group, however, QOL improved after treatment. Conclusions: Our study identified that treatment of SDB improves severity of the disease as defined by PSG, and this was associated with parental reports of improved QOL, despite treatment having no demonstrable impacts on sleep quality, behavior, or daytime functioning

    Swaddling and the Risk of Sudden Infant Death Syndrome:A Meta-analysis

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    CONTEXT: Swaddling is a traditional practice of wrapping infants to promote calming and sleep. Although the benefits and risks of swaddling in general have been studied, the practice in relation to sudden infant death syndrome remains unclear. OBJECTIVE: The goal of this study was to conduct an individual-level meta-analysis of sudden infant death syndrome risk for infants swaddled for sleep. DATA SOURCES: Additional data on sleeping position and age were provided by authors of included studies. STUDY SELECTION: Observational studies that measured swaddling for the last or reference sleep were included. DATA EXTRACTION: Of 283 articles screened, 4 studies met the inclusion criteria. RESULTS: There was significant heterogeneity among studies (I2 = 65.5%; P = .03), and a random effects model was therefore used for analysis. The overall age-adjusted pooled odds ratio (OR) for swaddling in all 4 studies was 1.58 (95% confidence interval [CI], 0.97–2.58). Removing the most recent study conducted in the United Kingdom reduced the heterogeneity (I2 = 28.2%; P = .25) and provided a pooled OR (using a fixed effects model) of 1.38 (95% CI, 1.05–1.80). Swaddling risk varied according to position placed for sleep; the risk was highest for prone sleeping (OR, 12.99 [95% CI, 4.14–40.77]), followed by side sleeping (OR, 3.16 [95% CI, 2.08–4.81]) and supine sleeping (OR, 1.93 [95% CI, 1.27–2.93]). Limited evidence suggested swaddling risk increased with infant age and was associated with a twofold risk for infants aged &amp;gt;6 months. LIMITATIONS: Heterogeneity among the few studies available, imprecise definitions of swaddling, and difficulties controlling for further known risks make interpretation difficult. CONCLUSIONS: Current advice to avoid front or side positions for sleep especially applies to infants who are swaddled. Consideration should be given to an age after which swaddling should be discouraged. </jats:sec

    Comparison between pulsed and continuous radiofrequency delivery

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    Das paroxysmale Vorhofflimmern (AF) wird zu 94% aus Foci aus dem Bereich von 2 bis 4 cm innerhalb der Pulmonalvenen getriggert [20]. Ein Ziel der Studie war die Klärung der Frage, inwieweit die Lokalisation der Ablationsnarbe im Bereich der Pulmonalvenen für einen Ablationserfolg ausschlaggebend ist. Als weiteres Studienziel galt es, die kontinuierliche Radiofrequenz-(RF)-Katheterablation mit der gepulsten Katheterablation zu vergleichen. Im Tierexperiment wurden Schweine lege artis anästhesiert und intubiert beatmet. Für jede Pulmonalvene wurden drei verschiedene anatomische Lokalisationen randomisiert ausgewählt: intraatrial, am Ostium der Pulmonalvene und innerhalb der Pulmonalvene selbst. Für die Ablation wurden drei verschiedene Energieeinstellungen verwendet: 30, 40 und 50 Watt (bei 55º C als Voreinstellung). Die Ablationen wurden mit einem zirkumferentiellen Ablationskatheter durchgeführt. Die Energiezufuhr zum Katheter wurde gepulst oder kontinuierlich gewählt. Die gepulste Katheterablation war bezüglich des Zeitmanagements sowie der Qualität der Homogenität und Transmuralität der kontinuierlichen Katheterablation überlegen. Bei der gepulsten Katheterablation traten weniger Komplikationen (PE, VT) auf als bei der kontinuierlichen Katheterablation. Die ostiale Pulmonalvenenisolation erwies sich als beste anatomische Lokalisation. Im Gegensatz dazu wiesen die intraatrialen Läsionen eine inhomogenere und eine weniger transmurale Ablation auf. Die Ablation innerhalb der Pulmonalvenen war signifikant häufiger mit einer Pulmonalvenenstenose (> 50% des Durchmessers) assoziiert. Die tierexperimentelle AF-Katheterablation im Bereich des Ostiums der Pulmonalvenen erzielte in Bezug auf die Homogenität der Ablationsnarbe und der Transmuralität der Läsion die besten Resultate. Des Weiteren wies die Ablation im Bereich des Ostiums ein geringeres Risiko hinsichtlich der Komplikation für eine Pulmonalvenenstenose auf. Die gepulste Katheterablation kann in signifikant kürzerer Zeit durchgeführt werden als die kontinuierliche Katheterablation. Bezüglich der Transmuralität und Homogenität der Läsionen konnte mit der gepulsten Katheterablation ein besseres Ergebnis erzielt werden als mit der kontinuierlichen Katheterablation.Atrial fibrillation is characterized by uncoordinated atrial activation often with irregular and high ventricular frequencies. Catheter ablation of the pulmonary veins (PV) has revolutionized treatment for invasive treatment of atrial fibrillation. The PV are often a trigger for the development of atrial fibrillation [20]. The aim of our study was first to evaluate different anatomical sites for PV-isolation: intraartial, ostial of the pulmonary veins or in the pulmonary veins it selves. The exact target for ablation is still unknown. The second aim of the study was to compare continuous radiofrequency (RF) delivery with pulsed RF. The animal experiments were performed in 8 anaesthetized and ventilated pigs. For each pulmonary vein three different anatomical sites for RF catheter ablation were selected: left atrial, the ostia of the PV or in the PV. In addition three different energy settings were used: 30, 40 and 50 Watts (55°C temperature presetting). The ablations were performed with an octapolar circumferential ablation catheter, either with continuous RF-energy delivery or with pulsed RF-energy delivery. The pulsed RF-energy delivery revealed the best results regarding transmurality (yes/no) and homogeneity (scaled). The best results for PV-isolation was the ostial of the PV. Intraatrial lesions were less homogenous and less transmural. Intrapulmonary vein ablation was associated with significant (> 50% diameter) stenosis of the PV (5/32). Ostial ablation of the PV may have the best results regarding homogeneity and transmurality with a low risk of PV stenosis. Pulsed energy delivery revealed the fastest way to create linear circumferential ostial lesions
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