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

Development and evaluation of ion exchange hollow fibers

An ion exchange hollow fiber impregnated with a vinylpyridine base was developed. The basic exchange resin used to impart the necessary permselectivity to the hollow fiber is a copolymer of vinylpyridine and dibromoethane prepared according to Rembaum. A slight pressure was used to impregnate the exchange monomer mixture into the void structure of the fiber wall, and with maintenance of subambient temperatures, the rate of cross-linking is slow enough to allow the growing polymer to permeate the wall structure before significant increase in polymer molecular weight. These ion exchange fibers are produced from polyacrylonitrile hollow fibers with an appropriate wall structure that enables the impregnating vinylpyridine monomer mixture to form a truly semipermeable anion barrier after curing

A Census of the Carina Nebula -- II. Energy Budget and Global Properties of the Nebulosity

The first paper in this series took a direct census of energy input from the known OB stars in the Carina Nebula, and in this paper we study the global properties of the surrounding nebulosity. We find that the total IR luminosity of Carina is about 1.2E7 Lsun, accounting for only about 50-60% of the known stellar luminosity from Paper I. Similarly, the ionizing photon luminosity -- (abridged; many important details omitted). Synchronized star formation around the periphery of Carina provides a strong case that star formation here was indeed triggered by stellar winds and UV radiation. This second generation appears to involve a cascade toward preferentially intermediate- and low-mass stars, but this may soon change when eta Car and its siblings explode. If the current reservoir of atomic and molecular gas can be tapped at that time, massive star formation may be rejuvinated around the periphery of Carina much as if it were a young version of Gould's Belt. Also, when these multiple SNe occur, the triggered second generation will be pelted repeatedly with SN ejecta bearing short-lived radioactive nuclides. Carina may therefore represent the most observable analog to the cradle of our own Solar System.Comment: MNRAS accepted, 14 pages, fig 1 in colo

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

Microwave attenuation and brightness temperature due to the gaseous atmosphere: A comparison of JPL and CCIR values

A sophisticated but flexible radiative transfer program designed to assure internal consistency was used to produce brightness temperature (sky noise temperature in a given direction) and gaseous attenuation curves. The curves, derived from atmospheric models, were compared and a new set was derived for a specified frequency range

Propagation considerations in land mobile satellite transmission

It appears likely that the Land Mobile Satellite Services (LMSS) will be authorized by the FCC for operation in the 800 to 900 MHz (UHF) and possibly near 1500 MHz (L-band). Propagation problems are clearly an important factor in the effectiveness of this service, but useful measurements are few, and produced contradictory interpretations. A first order overview of existing measurements is presented with particular attention to the first two NASA balloon to mobile vehicle propagation experiments. Some physical insight into the interpretation of propagation effects in LMSS transmissions is provided

Role of the community matron in advance care planning and ‘do not attempt CPR’ decision-making: a qualitative study

The community matron (CM) is often the key worker caring for patients with chronic, life-limiting, long-term conditions, but these patients are not always recognised as palliative cases. This study explored the experiences of CMs with regard to advance care planning (ACP) and ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decision-making to understand whether or not they felt adequately prepared for this aspect of their role, and why. Qualitative data were generated from six CMs using a broad interpretive phenomenological approach. Face-to-face recorded interviews were analysed using template analysis. The study found that although participants faced complex ethical situations around ACP and DNACPR almost on a daily basis, none had received any formal training despite the emphasis on training in national and local guidelines. Participants often struggled to get their patients accepted on to the Gold Standards Framework. The research found variability and complexity of cases to be the main barriers to clear identification of the palliative phase

The problem of off duty time in long duration space missions. Volume 3 - An annotated bibliography

Annotated bibliography on studies pertaining to off duty time during long duration manned space flight