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

Requirements and preliminary design for a general purpose real-time executive for flight computers

The requirements and preliminary design of a general purpose, real-time executive computers program for flight computers are provided. A description and the requirements are included for the major elements of the executive: an initialization model, a task scheduler, and an interrupt handler. Task priorities and various process interrupts are discussed. System parameters and variables are identified which make the design adaptable to various flight computer and applicaton specifications

Spacecraft-induced plasma energization and its role in flow phenomena

Plasma instabilities induced by orbiting vehicles can cause many important phenomena ranging from electron and ion heating and suprathermal electron tail energization, to enhanced ionization and optical emissions. We outline the basic collective processes leading to plasma energization near plasma sheaths and in regions of neutral gas streaming through plasma, and discuss the role of the induced collective effects in producing the optical emission spectra

Signature extension for spectral variation in soils, volume 4

The reduced 1975-1976 field data at Garden City, Kansas are presented. These data are being used to evaluate the SRVC model predictions, to compare the ERIM-SUITS model with both the SRVC results and field data, and finally, to provide a data base for reviewing multitemporal trajectories. In particular, the applicability of the tasselled cap transformation is reviewed. The first detailed verification of this approach utilizing actual field measured data from the LACIE field measurement program, rather than LANDSAT data, is given

Extracting scene feature vectors through modeling, volume 3

The remote estimation of the leaf area index of winter wheat at Finney County, Kansas was studied. The procedure developed consists of three activities: (1) field measurements; (2) model simulations; and (3) response classifications. The first activity is designed to identify model input parameters and develop a model evaluation data set. A stochastic plant canopy reflectance model is employed to simulate reflectance in the LANDSAT bands as a function of leaf area index for two phenological stages. An atmospheric model is used to translate these surface reflectances into simulated satellite radiance. A divergence classifier determines the relative similarity between model derived spectral responses and those of areas with unknown leaf area index. The unknown areas are assigned the index associated with the closest model response. This research demonstrated that the SRVC canopy reflectance model is appropriate for wheat scenes and that broad categories of leaf area index can be inferred from the procedure developed

Exploring the feasibility of international collaboration and relationship building through a virtual partnership scheme

International collaboration is an under-studied component of the Scholarship of Teaching and Learning (SoTL). This study sheds light on the process of international collaboration by illustrating an exploratory approach to the process of forming and maintaining collaborative partnerships. Participants in this study were put into pairs (each one comprised of one individual from the University of Glasgow and another from the University of Wisconsin System) and asked to participate in email correspondence over the course of one year. The text of participants’ emails was pooled and analyzed through a general inductive approach using NVivo software. The study, though small in nature, helps to illustrate and further understand international collaborative relationships. We offer suggestions for future international collaborations and discuss the implications of emphasizing such partnerships within SoTL

The Impact of Accurate Extinction Measurements for X-ray Spectral Models

Interstellar extinction includes both absorption and scattering of photons from interstellar gas and dust grains, and it has the effect of altering a source's spectrum and its total observed intensity. However, while multiple absorption models exist, there are no useful scattering models in standard X-ray spectrum fitting tools, such as XSPEC. Nonetheless, X-ray halos, created by scattering from dust grains, are detected around even moderately absorbed sources and the impact on an observed source spectrum can be significant, if modest, compared to direct absorption. By convolving the scattering cross section with dust models, we have created a spectral model as a function of energy, type of dust, and extraction region that can be used with models of direct absorption. This will ensure the extinction model is consistent and enable direct connections to be made between a source's X-ray spectral fits and its UV/optical extinction.Comment: 8 pages, 4 figure

Avian embryonic development in hyperdynamic environments

Embryos which developed for 24 hours in the oviduct of hens maintained at 2 G and which were subsequently incubated at Earth gravity had a 14% reduction in hatchability. Increased mortality during the first 4 days, and an increase in embryonic abnormalities were of the types usually found during the first mortality peak (2-3 days). Embryos in eggs that were produced at Earth gravity and continued their development on the centrifuge at fields of 2 G or less did not appear to be greatly affected by the treatment. At 4 G, 91% of the embryos died, mostly on the first and second days of incubation. Abnormalities prominent in the centrifuged eggs include: (a) a failure of the primitive streak to develop; (b) interference with the development of the axial skeleton; (c) multiple hemorrhages, mostly petechial which is consistent with capillary fragility; and (d) retardation of embryo growth, possibly caused by an interference with gaseous diffusion, the result of an acceleration-induced increase in gas density in the centrifuging incubator