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

Marvin: A Heuristic Search Planner with Online Macro-Action Learning

This paper describes Marvin, a planner that competed in the Fourth International Planning Competition (IPC 4). Marvin uses action-sequence-memoisation techniques to generate macro-actions, which are then used during search for a solution plan. We provide an overview of its architecture and search behaviour, detailing the algorithms used. We also empirically demonstrate the effectiveness of its features in various planning domains; in particular, the effects on performance due to the use of macro-actions, the novel features of its search behaviour, and the native support of ADL and Derived Predicates

Reflectance Modeling

The overall goal of this work has been to develop a set of computational tools and media abstractions for the terrain bidirectional reflectance problem. The modeling of soil and vegetation surfaces has been emphasized with a gradual increase in the complexity of the media geometries treated. Pragmatic problems involved in the combined modeling of soil, vegetation, and atmospheric effects have been of interest and one of the objectives has been to describe the canopy reflectance problem in a classical radiative transfer sense permitting easier inclusion of our work by other workers in the radiative transfer field

Development of non-destructive methodology using ATR-FTIR with PCA to differentiate between historical Pacific barkcloth

Barkcloths, non-woven textiles originating from the Pacific Islands, form part of many museum collections and date back to the 18th and 19th centuries. The ability to determine different plant species which have been used for producing barkcloth is required by art historians to help understand the origin and use of the cloths and by conservators for whom the species type may have an impact on textile durability, deterioration and hence conservation. However, to date the development of a non-destructive, robust analytical technique has been elusive. This article describes the use of Fourier transform infrared spectroscopy with attenuated total reflection (ATR-FTIR) and principal component analysis (PCA) todifferentiation between historic barkcloths. Three distinct groups of historic cloths were identified using PCA of the FTIR region between 1200 and 1600 cm−1 where molecular vibrations associated with tannins and lignins are dominant. Analysis of contemporary cloths only identified Pipturus albidus cloth as different and highlighted the difficulties around producing a representative textile sample to mimic the historic cloths. While the methodology does not itself identify species, the use of historically well-provenanced samples allows cloths showing similarities to group together and is a significant aid to identification

Transfer valve Patent

Three-port transfer valve with one port open continuously suitable for manned space fligh