With the availability of structured education abysmally poor7 and at the risk of being controversial, is this simply the equivalent of a ‘stealth tax’ to restrict access to SAP technology and force people with T1D to jump through ever increasing numbers of hoops to be able to access and benefit from it? Who will provide the education on diet, lifestyle and counselling? What will the content of that structured education be? To be even more controversial, how can individuals who are struggling with disabling hypoglycaemia use SAP without intensive support when, as an example, the University of Virginia’s artificial pancreas (AP) team (which provides intensive education, supervision, and monitoring) reported during this ATTD meeting that fully 30% of their study participants did not use the system consistently.8 These 14 individuals wore their AP system for 6 months with all of the support a funded research study could provide and yet 30% of their participants did not use the system consistently. Sadly, the reasons for that discontinued use were not reported. Gathering information about the reasons for discontinued use are vital for all technology trials and will be key to helping create programmes that actually increase the chance that patients will be successful in their use of technology.
As new automated insulin delivery systems are developed, there is a considerable effort to learn these lessons and research teams around the world, regulatory approvals bodies, industry, advocacy groups and academia are pulling together to ensure that psychosocial outcomes are effectively assessed alongside safety and biomedical outcomes. The views of healthcare professionals are being sought alongside those of people living with T1D to ensure that when devices are brought to market and available, there is a supportive clinical environment and process to support uptake and continued use.
It is recognised that the introduction of these new systems represents a ground-shift in what diabetes technology will do for the individual user. All devices to date support self-management, however automated insulin delivery systems will take much of the self-management tasks away from the individual. This brings both positive and potentially negative impacts psychosocially in terms of quality of life, control over diabetes, time required to manage diabetes and potential reduction in diabetes-related burden.
Back to the ATTD, in his overview of the importance of understanding the psychosocial impact of automated insulin delivery (AID) systems, Dr Richard Bergenstal asked attendees to consider whether or not the patient’s needs are at the centre of the development of AID systems.9 He further challenged the audience to work toward improving their collaborative relationship with their patients by being empathic listeners. He lauded the Food and Drug Administration (FDA) for creating a patient engagement advisory committee to help gather information regarding patient’s needs, experiences and perspectives. Questions regarding the patient’s experiences regarding technology’s comfort and tolerability were raised as was the user’s ability to trust the technology, whether using it offered a sense of hope and whether it impacted family relationships. During the same session, Dr. Katharine Barnard asked the audience to consider the balance between outcomes versus cost and suggested that both sides of the equation depend upon the stakeholder.
So that brings us back to perhaps the most important question of all. How do we best support individuals with T1D to use technologies to their best advantage, whilst minimising the burden on everyday living? Let’s hope we can present the answer to that question in relation to AID systems at ATTD conferences in the not too distant future. Watch this space.