Adherence to prophylaxis in adolescents and young adults with severe haemophilia, A qualitative study with patients

© 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.Abstract Introduction: Reported levels of adherence to prophylaxis among young people with haemophilia (YPH) vary widely and are predominately based on estimations made by healthcare professionals and parents. Reasons for (non)adherence among YPH in particular have not been evidenced. Aim: to examine experiences in relation to prophylaxis with YPH themselves, and barriers and facilitators to their adherence. Methods: 11 Participants were recruited in five haemophilia centres across England and Wales. All patients who met the inclusion criteria (aged 12-25, diagnosed with haemophilia, on prophylaxis) were approached during a routine check-up appointment, and all participants who agreed to take part were interviewed. Interviews were audio recorded, transcribed and analysed using Interpretative Phenomenological Analysis. Results: Self-reported adherence to prophylaxis was good. Few participants admitted to intentionally skipping injections although they reported sometimes forgetting. However, due to the increasingly personalised and flexible approach to prophylaxis, adherence is not straightforward to define. Barriers to adherence included a busy lifestyle, dislike of the intravenous injection, venous access issues, anxiety or stress and being out of one’s normal routine. Support was an important facilitator to adherence, including support from health professionals at the haemophilia centre as well as friends. Parents appear to be very involved with their sons’ haemophilia management, even after their sons leave home. Conclusion: What this study adds is that the increasingly flexible and personalized approach to managing prophylaxis in haemophilia may sometimes lead to confusion around treatment frequency and dosing. This may lead to accidental non-adherence, which is distinct from both skipping and forgetting. Advice from haemophilia teams may not always be consistent, and is likely to be interpreted differently by different individuals. Some additional training and education of patients and their families to increase their knowledge and skills around prophylaxis may reduce this confusion and therefore is likely to improve adherence further.Peer reviewedFinal Published versio

T Tauri variability in the context of the beat-frequency model

We examine the implications of a beat frequency modulated model of T Tauri accretion. In particular we show that measurements of the variability of accretion generated lines can be used in conjunction with existing photometry to obtain a measurement of the underlying photospheric and disc flux. This provides an independent way of checking spectral energy distribution modelling. In addition, we show how spectroscopy of T Tauri stars can reveal the inclination angle between the magnetic axis and the plane of the disc.Comment: uuencoded compressed postscript. The preprint is also available at http://www.ast.cam.ac.uk/preprint/PrePrint.htm

Steam as the working fluid for power recovery from exhaust gases by means of screw expanders

Rankine cycle systems, using steam as a working fluid, are not well suited to the recovery of power fromheat sources in the 300-450 °C temperature range, such as internal combustion engine exhaust gases, mainly due to the relatively large enthalpy of vaporization of water. Admitting the steam to the expander as vapour approximately 50 per cent dry, would be preferable but turbines cannot be used to expand vapours from this state. However, screw expanders can operate well in this mode. It is shown that, apart from being environmentally benign and free from flammability risks, a screw-driven wet steam cycle system can recover power from engine exhaust gases, with comparable efficiencies to turbine-driven systems using organic fluids at a significantly lower cost per unit output

Steam as the working fluid for power recovery from exhaust gases by means of screw expanders

Rankine cycle systems, using steam as a working fluid, are not well suited to the recovery of power fromheat sources in the 300-450 °C temperature range, such as internal combustion engine exhaust gases, mainly due to the relatively large enthalpy of vaporization of water. Admitting the steam to the expander as vapour approximately 50 per cent dry, would be preferable but turbines cannot be used to expand vapours from this state. However, screw expanders can operate well in this mode. It is shown that, apart from being environmentally benign and free from flammability risks, a screw-driven wet steam cycle system can recover power from engine exhaust gases, with comparable efficiencies to turbine-driven systems using organic fluids at a significantly lower cost per unit output

Lesbian brides: post-queer popular culture

The last decade has witnessed a proliferation of lesbian representations in European and North American popular culture, particularly within television drama and broader celebrity culture. The abundance of “positive” and “ordinary” representations of lesbians is widely celebrated as signifying progress in queer struggles for social equality. Yet, as this article details, the terms of the visibility extended to lesbians within popular culture often a rm ideals of hetero-patriarchal, white femininity. Focusing on the visual and narrative registers within which lesbian romances are mediated within television drama, this article examines the emergence of what we describe as “the lesbian normal.” Tracking the ways in which the lesbian normal is anchored in a longer history of “the normal gay,” it argues that the lesbian normal is indicative of the emergence of a broader post-feminist and post-queer popular culture, in which feminist and queer struggles are imagined as completed and belonging to the past. Post-queer popular culture is depoliticising in its e ects, diminishing the critical potential of feminist and queer politics, and silencing the actually existing conditions of inequality, prejudice, and stigma that continue to shape lesbian lives

NGC1333/IRAS4: A multiple star formation laboratory

We present SCUBA observations of the protomultiple system NGC1333/IRAS4 at 450um and 850um. The 850um map shows significant extended emission which is most probably a remnant of the initial cloud core. At 450um, the component 4A is seen to have an elongated shape suggestive of a disk. Also we confirm that in addition to the 4A and 4B system, there exists another component 4C, which appears to lie out of the plane of the system and of the extended emission. Deconvolution of the beam reveals a binary companion to IRAS4B. Simple considerations of binary dynamics suggest that this triple 4A-4BI-4BII system is unstable and will probably not survive in its current form. Thus IRAS4 provides evidence that systems can evolve from higher to lower multiplicity as they move towards the main sequence. We construct a map of spectral index from the two wavelengths, and comment on the implications of this for dust evolution and temperature differences across the map. There is evidence that in the region of component 4A the dust has evolved, probably by coagulating into larger or more complex grains. Furthermore, there is evidence from the spectral index maps that dust from this object is being entrained in its associated outflow.Comment: 10 pages, 10 figures. To appear in MNRAS. Uses mn.sty. Also available at http://www.astro.phys.ethz.ch/papers/smith/smith_p_m.htm

Approaches to Three-Dimensional Transformation Optical Media Using Quasi-Conformal Coordinate Transformations

We introduce an approach to the design of three-dimensional transformation optical (TO) media based on a generalized quasi-conformal mapping approach. The generalized quasi-conformal TO (QCTO) approach enables the design of media that can, in principle, be broadband and low-loss, while controlling the propagation of waves with arbitrary angles of incidence and polarization. We illustrate the method in the design of a three-dimensional "carpet" ground plane cloak and of a flattened Luneburg lens. Ray-trace studies provide a confirmation of the performance of the QCTO media, while also revealing the limited performance of index-only versions of these devices