Are you HIRT? (Hemophilia Injury Recognition Tool): Perceptions from young men with mild hemophilia in Canada on the use of the mobile app for injury self-management

Introduction/ Objective: Young men with mild hemophilia have a unique challenge with accessing relevant information to assist injury self-management. They do not bleed frequently. This limited experience may mean that they do not always identify musculoskeletal injuries requiring medical attention, potentially leading to significant health consequences. In response to this challenge, a team of clinicians, researchers and young men with mild hemophilia developed a self-assessment pathway which was converted into a mobile app to address the need for easier access to assessment resources. This study investigated the perceptions of young men with mild hemophilia in Canada on the use of the mobile app HIRT? (Hemophilia Injury Recognition Tool) for injury self-management. Methods: Key informant interviews were conducted with 12 young men with mild hemophilia, 18-35 years old. A mixed methods design was used. The qualitative method of interpretive description was used through in-depth recorded and transcribed interviews about access and usefulness of the mobile app. Qualitative data were analysed using inductive content analysis to identify themes and patterns. The quantitative data, gathered by a short self-report questionnaire, evaluated perceived injury self-management strategies and app utility. Perceived confidence levels for using and not using the app were also collected. Non-parametric McNemar chi-square test and Wilcoxon signed rank test were used to determine the association between self-management strategies and the confidence levels using the app versus not using the app, with a significance level set at p < .05. Results: From the qualitative analysis, themes included accessibility, credibility, the benefit of embedded alarms and overall usefulness. Quantitative analyses illustrated that perceived confidence levels significantly increased (p =0.004) with the use of the app compared to not using the app. However, perceived self-management strategies did not significantly differ when participants thought about not using the app and using the app. Conclusions: Technology is rapidly advancing and education needs to be accessible. This study gives evidence that there is a preference for a mobile app intervention and that perceived confidence in injury self-management significantly improved for young men with mild hemophilia in Canada with the use of HIRT?

Cloud Services Brokerage for Mobile Ubiquitous Computing

Recently, companies are adopting Mobile Cloud Computing (MCC) to efficiently deliver enterprise services to users (or consumers) on their personalized devices. MCC is the facilitation of mobile devices (e.g., smartphones, tablets, notebooks, and smart watches) to access virtualized services such as software applications, servers, storage, and network services over the Internet. With the advancement and diversity of the mobile landscape, there has been a growing trend in consumer attitude where a single user owns multiple mobile devices. This paradigm of supporting a single user or consumer to access multiple services from n-devices is referred to as the Ubiquitous Cloud Computing (UCC) or the Personal Cloud Computing. In the UCC era, consumers expect to have application and data consistency across their multiple devices and in real time. However, this expectation can be hindered by the intermittent loss of connectivity in wireless networks, user mobility, and peak load demands. Hence, this dissertation presents an architectural framework called, Cloud Services Brokerage for Mobile Ubiquitous Cloud Computing (CSB-UCC), which ensures soft real-time and reliable services consumption on multiple devices of users. The CSB-UCC acts as an application middleware broker that connects the n-devices of users to the multi-cloud services. The designed system determines the multi-cloud services based on the user's subscriptions and the n-devices are determined through device registration on the broker. The preliminary evaluations of the designed system shows that the following are achieved: 1) high scalability through the adoption of a distributed architecture of the brokerage service, 2) providing soft real-time application synchronization for consistent user experience through an enhanced mobile-to-cloud proximity-based access technique, 3) reliable error recovery from system failure through transactional services re-assignment to active nodes, and 4) transparent audit trail through access-level and context-centric provenance

Marketing y atención farmacéutica en el abordaje de enfermedades raras

Las enfermedades raras plantean retos únicos a pacientes, cuidadores y profesionales sanitarios. Las farmacias comunitarias desempeñan un papel fundamental a la hora de proporcionar apoyo y medicamentos a las personas con enfermedades raras. Sin embargo, poca investigación se ha centrado en las estrategias de marketing y prácticas de comunicación empleadas por las farmacias comunitarias para concienciar, difundir información y abordar las necesidades específicas de esta población vulnerable de pacientes. El objetivo de esta tesis es describir las características de la atención al paciente con enfermedades raras y sus cuidadores o familiares en las farmacias comunitarias. Para ello se han diseñado dos estudios observacionales descriptivos transversales y prospectivos. En el primero, la población está formada por los usuarios de farmacias comunitarias como pacientes con enfermedades raras o bien sus familiares, cuidadores u otro tipo de relación por la que deban hacer uso de los servicios de la farmacias comunitarias para atender las necesidades de atención farmacológica de pacientes con enfermedades raras. En este estudio han participado 253 sujetos que han respondido un ¿Cuestionario de Atención farmacéutica en el abordaje de enfermedades raras¿. En el segundo estudio, la población la forman farmacéuticos titulares de farmacias comunitarias. Han participado 100 titulares de farmacias comunitarias que han respondido el ¿Cuestionario del papel del farmacéutico en el abordaje de enfermedades raras¿. Los resultados del primer estudio muestran que los pacientes con enfermedades raras y sus cuidadores conocen sus necesidades, aunque demandan servicios complementarios relacionados con dermofarmacia, dietética y nutrición o productos sanitarios. Su nivel de satisfacción con la atención farmacéutica es alto. Respecto al segundo estudio, se observa la necesidad de promover habilidades como la empatía, la escucha activa o la dedicación del tiempo suficiente para proporcionar una atención farmacéutica humana y de calidad.Farmaci