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

Federating distributed clinical data for the prediction of adverse hypotensive events

The ability to predict adverse hypotensive events, where a patient's arterial blood pressure drops to abnormally low (and dangerous) levels, would be of major benefit to the fields of primary and secondary health care, and especially to the traumatic brain injury domain. A wealth of data exist in health care systems providing information on the major health indicators of patients in hospitals (blood pressure, temperature, heart rate, etc.). It is believed that if enough of these data could be drawn together and analysed in a systematic way, then a system could be built that will trigger an alarm predicting the onset of a hypotensive event over a useful time scale, e.g. half an hour in advance. In such circumstances, avoidance measures can be taken to prevent such events arising. This is the basis for the Avert-IT project (http://www.avert-it.org), a collaborative EU-funded project involving the construction of a hypotension alarm system exploiting Bayesian neural networks using techniques of data federation to bring together the relevant information for study and system development

A measurement of the differential cross section for the two-body photodisintegration of 3He at theta_LAB = 90deg using tagged photons in the energy range 14 -- 31 MeV

The two-body photodisintegration of 3He has been investigated using tagged photons with energies from 14 -- 31 MeV at MAX-lab in Lund, Sweden. The two-body breakup channel was unambiguously identified by the (nonsimultaneous) detection of both protons and deuterons. This approach was made feasible by the over-determined kinematic situation afforded by the tagged-photon technique. Proton- and deuteron-energy spectra were measured using four silicon surface-barrier detector telescopes located at a laboratory angle of 90deg with respect to the incident photon-beam direction. Average statistical and systematic uncertainties of 5.7% and 6.6% in the differential cross section were obtained for 11 photon-energy bins with an average width of 1.2 MeV. The results are compared to previous experimental data measured at comparable photon energies as well as to the results of two recent Faddeev calculations which employ realistic potential models and take into account three-nucleon forces and final-state interactions. Both the accuracy and precision of the present data are improved over the previous measurements. The data are in good agreement with most of the previous results, and favor the inclusion of three-nucleon forces in the calculations.Comment: 12 pages, 13 figures; further Referee comments addresse

Discovery of an Optical Jet in the BL Lac Object 3C 371

We have detected an optical jet in the BL Lac object 3C 371 that coincides with the radio jet in this object in the central few kpc. The most notable feature is a bright optical knot 3 arcsec (4 kpc) from the nucleus that occurs at the location where the jet apparently changes its direction by ~30 degrees. The radio, near-infrared and optical observations of this knot are consistent with a single power-law spectrum with a radio-optical spectral index alpha = -0.81. One possible scenario for the observed turn is that the jet is interacting with the material in the bridge connecting 3C 371 to nearby galaxies and the pressure gradient is deflecting the jet significantly.Comment: 11 pages, LaTeX, 4 figures (1 eps, 3 gifs), accepted for publication in ApJ Letter

Compton Scattering from the Deuteron and Extracted Neutron Polarizabilities

Differential cross sections for Compton scattering from the deuteron were measured at MAX-lab for incident photon energies of 55 MeV and 66 MeV at nominal laboratory angles of $45^\circ$, $125^\circ$, and $135^\circ$. Tagged photons were scattered from liquid deuterium and detected in three NaI spectrometers. By comparing the data with theoretical calculations in the framework of a one-boson-exchange potential model, the sum and difference of the isospin-averaged nucleon polarizabilities, $\alpha_N + \beta_N = 17.4 \pm 3.7$ and $\alpha_N - \beta_N = 6.4 \pm 2.4$ (in units of $10^{-4}$ fm$^3$), have been determined. By combining the latter with the global-averaged value for $\alpha_p - \beta_p$ and using the predictions of the Baldin sum rule for the sum of the nucleon polarizabilities, we have obtained values for the neutron electric and magnetic polarizabilities of $\alpha_n= 8.8 \pm 2.4$(total) $\pm 3.0$(model) and $\beta_n = 6.5 \mp 2.4$(total) $\mp 3.0$(model), respectively.Comment: 4 pages, 2 figures, revtex. The text is substantially revised. The cross sections are slightly different due to improvements in the analysi

Multifrequency Observations of the Gamma-Ray Blazar 3C 279 in Low-State during Integral AO-1

We report first results of a multifrequency campaign from radio to hard X-ray energies of the prominent gamma-ray blazar 3C 279 during the first year of the INTEGRAL mission. The variable blazar was found at a low activity level, but was detected by all participating instruments. Subsequently a multifrequency spectrum could be compiled. The individual measurements as well as the compiled multifrequency spectrum are presented. In addition, this 2003 broadband spectrum is compared to one measured in 1999 during a high activity period of 3C 279.Comment: 4 pages including 6 figures, to appear in: 'Proc. of the 5th INTEGRAL Workshop', ESA SP-552, in pres

Methanol in W3(H2O) and Surrounding Regions

We present the results of an interferometric study of 38 millimeter-wave lines of CH3OH in the region around the water maser source W3(H2O) and a region extending about 30" to the south and west of the hydroxyl maser source W3(OH). The methanol emitting region around W3(H2O) has an extent of 2.0" x 1.2" (4400 x 2600 AU). The density is of order 1.e7 cm-3, sufficient to thermalize most of the methanol lines. The kinetic temperature is approximately 140 K and the methanol fractional abundance greater than 1.e-6, indicative of a high degree of grain mantle evaporation. The W3(H2O) source contains sub-structure, with peaks corresponding to the TW source and Wyrowski's B/C, separated by 2500 AU in projection. The kinematics are consistent with these being distinct protostellar cores in a wide binary orbit and a dynamical mass for the region of a few tens of Mo. The extended methanol emission to the southwest of W3(OH) is seen strongly only from the lowest excitation lines and from lines known elsewhere to be class I methanol masers, namely the 84.5 GHz 5(-1)-4(0)E and 95.2 GHz 8(0)-7(1)A+ lines. Within this region there are two compact clumps, which we denote as swA and swB, each about 15" (0.16 pc projected distance) away from W3(OH). Excitation analysis of these clumps indicates the presence of lines with inverted populations but only weak amplification. The sources swA and swB appear to have kinetic temperatures of order 50-100 K and densities of order 1.e5 - 1.e6 cm-3. The methanol fractional abundance for the warmer clump is of order 1.e-7, suggestive of partial grain mantle evaporation. The clumping occurs on mass scales of order 1 Mo.Comment: 28 pages including 6 figures and 4 tables, accepted by Ap

Spatial distribution of low-energy plasma around 2 comet 67P/CG from Rosetta measurements

International audienceWe use measurements from the Rosetta plasma consortium (RPC) Langmuir probe (LAP) and mutual impedance probe (MIP) to study the spatial distribution of low-energy plasma in the near-nucleus coma of comet 67P/Churyumov-Gerasimenko. The spatial distribution is highly structured with the highest density in the summer hemisphere and above the region connecting the two main lobes of the comet, i.e. the neck region. There is a clear correlation with the neutral density and the plasma to neutral density ratio is found to be ∼1-2·10 −6 , at a cometocentric distance of 10 km and at 3.1 AU from the sun. A clear 6.2 h modulation of the plasma is seen as the neck is exposed twice per rotation. The electron density of the collisonless plasma within 260 km from the nucleus falls of with radial distance as ∼1/r. The spatial structure indicates that local ionization of neutral gas is the dominant source of low-energy plasma around the comet