Co-development of a tool for personalised methods of creating virtual body representation models in CRPS

Body perception disturbances are a common feature of Complex Regional Pain Syndrome (CRPS), and have been targeted for rehabilitation due to their association with pain and other clinical measures. Changs to perception of the affected limb vary across individuals in terms of type and severity, however treatments often take a ‘one-size-fits-all’ approach to alter body perception in CRPS, with mixed effectiveness. Interventions may be improved if they are tailored to an individual’s unique disturbances, however there are currently no methods for such a personalised approach. We aimed to co-develop a novel virtual tool that enables people with CRPS to create and embody virtual hands that model their distorted limb perceptions, and what they desire their limb perceptions to be. Taking a Patient and Public Involvement (PPI) approach, we worked with four partners living with upper-limb CRPS who experienced different disturbances in affected limb perception. Each partner collaborated with the researcher to create three virtual hand models: 1) their idea of a typical hand, 2) their current distorted perception and 3) their desired hand appearance. Partners provided feedback on the tool, made suggestions for further development and reflected on their experiences when embodying each model. We successfully created personalised virtual hands with dynamic, real-time changes. Partners found the tool accessible, engaging and expressed enthusiasm for its potential use as an intervention. Anecdotal evidence showed that embodiment of different hand models affected body perception, pain, cognitive-affective responses and motor control, with responses varying across individuals. Personalisation was central to the partner’s positive experiences with the tool. These insights support the potential to develop the tool as an intervention method for targeting body perception disturbances in CRPS, and the next steps for this further development are discussed. Partners’ engagement with the tool also provided wider insights into body perception in CRPS, and highlighted the potential of using the tool to communicate and measure body perception. Overall, tailoring interventions to an individual’s unique disturbed and desired limb perception holds promise.