Introducing the start of a new research project as part of the 2024 Professional Doctorate symposium.
DOCUMENT
Prophylactic replacement therapy is the cornerstone of treatment in severe haemophilia. Regular infusions with clotting factor concentrate have been proven effective to prevent bleeding, subsequent (joint) damage, and positively affect the impact of haemophilia on daily life [1]. Patients or parents of younger patients learn to infuse clotting factor concentrate in a peripheral vein (i.v.) or a central venous access device (CVAD) [2].
DOCUMENT
The overlap in symptoms between joint bleeds and flare‐ups of haemophilia arthropathy (HA) creates difficulties in differentiating between the two conditions. Diagnosis of haemarthrosis is currently empirically made based upon clinical presentations. However, no standard diagnostic criteria are available. To offer appropriate treatment, rapid and accurate diagnosis is essential. Additionally, adequate differentiation can decrease health costs significantly. Aim The aim of this study was to identify signs and symptoms to differentiate between an intra‐articular joint bleed and an acute flare‐up of HA in patients with haemophilia and make an initial proposal of items to include in a diagnostic criteria set. Methods Six focus group interviews with a total of 13 patients and 15 professionals were carried out. The focus groups were structured following the Nominal Group Technique (NGT). Results The most important signs and symptoms used to differentiate between joint bleeds and HA were (i) course of the symptoms, (ii) cause of the complaints, (iii) joint history, (iv) type of pain and (v) degree of impairments in range of motion. Conclusion This qualitative study provides insight into signs and symptoms that are currently used to differentiate between joint bleeds and flare‐ups of HA. Results of this study can be used to develop a valid and standardized clinical diagnostic criteria set to differentiate between these two conditions. Further research is necessary to validate the signs and symptoms found in this study.
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Hoe waarderen Nederlandse nieuwsconsumenten de selectie door buitenlandredacties en in hoeverre komen de buitenlandse ontwikkelingen aan bod die zij belangrijk vinden?
In 2007 at Ropecon, a large Finnish roleplaying convention, Emily Care Boss coined the term bleed to refer to emotional transference that sometimes happened to players of roleplaying games. Bleed describes an effect where emotions and attitudes experienced while roleplaying a character continue on after the roleplaying session was over, or the other way around, where a player brings their own feelings into the character they are embodying. For example, a player would roleplay a romance with another player's character, and then develop feelings for said player after the game was over. Bleed can create powerful effects in a roleplaying session, both positive and negative, which has resulted in the development of various best practices and safety tools that analogue game designers can draw upon, and roleplaying games frequently have mechanics designed around inducing and maximizing particular types of bleed in their players. Bleed mechanics lend themselves particularly well to exploring queer and otherwise marginalized identities, generating empathy, and exploring acts of political resistance. They are a powerful tool in the analogue game designers’ toolbox. Digital games make comparatively far less use of bleed in their designs than analogue games—the concept of bleed is not well-known among digital game designers. Consequently, there is little guidance for designing digital bleed mechanics, and insufficient safety tools with which to do so. With how powerful these effects can be, the knowledge and tools gaps for digital games needs addressing. This research project will create primarily digital narrative games that are explicitly designed to invoke bleed, and seeks to provide designers with new frameworks and safety tools to create bleed effects for digital games. Games will be created with varying themes and approaches regarding identity and storytelling to explore how, in particular, narrative design influences bleed in digital games.
This is a doctoral research project on the Professional Doctorate Arts + Creative pilot scheme. The project studies design and safety tools around 'bleed', a term used in roleplaying game spaces to describe emotions from a roleplaying session affecting the player outside of the game (and viceversa). Bleed design will be applied to the production of digital narrative games.
